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    faten faten Document Transcript

    • 1 Appendix I 2 Communications 3 Materials 4 5Contents: This appendix provides the communications plan for the 131I/NCI 6Communications Project (I.1) , information pertaining to the January 2000 NCI/CDC 7workshop entitled “I-131 Fallout from NTS: Informing the Public” (I.2–I.5), a description 8of tools typically utilized for communications planning materials (I.6), and a description of 9the campaign implementation and evaluation (I.7). Although the campaign is ongoing, these 10materials are provided for historical reference. 11 12 I.1 Outline for I-131 Communications Plan 13 I.1.1 Situation Analysis 14 ♦ In the 1950s and early 1960s, the United States Government conducted almost 100 15 atmospheric nuclear bomb tests in the Nevada Test Site (NTS), releasing iodine-131 16 (I-131) and other radionuclides into the atmosphere. In the same period, there were 17 about a dozen underground tests where some atmospheric release of radioactive 18 material was possible. Most of the current scientific information on the subject 19 relates to I-131, which concentrates in the thyroid gland and may be linked to thyroid 20 cancer and other thyroid disorders. Although I-131 released from the NTS has 21 decayed and is no longer present in the environment, at the time of testing, 22 radioactivity was deposited on soil and vegetation throughout the country. Doses of 23 radiation varied widely according to geographic area based on wind and rainfall 24 patterns. Some areas received minimal exposure, while others, sometimes far from 25 the test sites, received higher radiation exposures. After cows and goats consumed 26 the contaminated vegetation, I-131 appeared in the milk produced by those animals. 27 ♦ Exposure to I-131 may increase the risk of thyroid cancer and other thyroid disorders. 28 People who drank milk, particularly children, are estimated to have received higher 1 I-1
    • 29 than average doses of I-131 from the contaminated milk which have been associated 30 with a higher risk for thyroid cancer and other thyroid diseases. Those who were or 31 may have been exposed to I-131 should be informed of their exposure and the 32 potential health effects so that they can consult with a health care provider for 33 monitoring of their thyroid and possible screening. Those who do not have a health 34 care provider should be informed about existing resources that may be able to assist 35 them. Although a diagnosis of thyroid cancer and other non-cancerous conditions 36 must be treated seriously, thyroid cancer is relatively uncommon and is not normally 37 fatal, particularly with early detection and proper treatment. 38 ♦ Congress mandated that the National Cancer Institute (NCI) assess the public health 39 impact of the NTS on the American people. Since the publication of NCI’s report on 40 estimated exposures and thyroid doses in 1997, an Institute of Medicine committee 41 reviewed and assessed the validity of the report and made recommendations to the 42 government on how to communicate with the public aboutI-131 exposure from the 43 NTS. 44 ♦ NCI has taken the lead role for the Federal Government in the development of a 45 communications plan related to I-131 fallout exposure from NTS. In January 2000, a 46 communications workshop – sponsored by NCI and the Centers for Disease Control 47 (CDC) – was held to gather input from citizens, consumer advocates, physicians, 48 scientists, health department representatives, and other government officials on the 49 best ways to inform the public and health professionals about I-131 exposure. One 50 outcome of the workshop was the formation of a Communications Development 51 Group (CDG), made up of representatives from community groups, health 52 professionals, and concerned citizens, to offer guidance to NCI staff with the 53 development of an NTS I-131 communications plan. 54 ♦ Although the current communications plan focuses on I-131 exposure from NTS, 55 there are other sources of I-131 exposures in specific areas around the country. There 56 are four additional nuclear reactor sites in the United States that released I-131 into 57 the atmosphere that may have resulted in multiple I-131 exposures to nearby 58 communities. These sites include the following: Hanford Nuclear Reservation in 2 I-2
    • 59 Richmond, Washington; Idaho National Engineering and Environmental Laboratory 60 in Idaho Falls, Idaho; Oak Ridge National Laboratory in Oak Ridge, Tennessee; and 61 Savannah River Site in Aiken, South Carolina. There is a level of uncertainty 62 associated with the health effects from multiple exposures to I-131, although it is 63 likely that the health impact of multiple exposures may be more significant than a 64 single dose exposure. In order to address this issue, the current plan will include 65 messages that individuals who lived in and around the aforementioned areas may 66 have received exposure to I-131 from NTS as well as from other sources, and that 67 these multiple I-131 exposures may pose resultant health risks. 68 ♦ The feasibility of collecting scientific information about the health effects from global 69 fallout and the levels of exposure from other radionuclides is currently being 70 assessed. If there is agreement on public health outreach concerning multiple I-131 71 exposures and the levels of exposure from other radionuclides, this communications 72 planning process may be used as a blueprint for future communications efforts. 73 I.1.2 Challenges and Opportunities 74Challenges 75 ♦ The credibility of the Federal Government, as a whole, has been compromised on the 76 radiation issue. Therefore, the Federal Government should work with third parties in 77 providing informational messages. In addition, credibility issues vary across 78 government agencies and according to individuals’ experiences with particular 79 agencies on issues related to radiation. The general public is largely unaware of 80 radiation exposure that occurred nearly 50 years ago and may experience a variety of 81 emotions when they learn about potential exposure risks. Some people may be 82 justifiably concerned about their exposure and the risks that result from it; others may 83 be unnecessarily frightened; some may question why the government conducted the 84 tests, exposing the public to I-131, while others may not have any interest in the issue. 85 For those who have suffered from thyroid illness or have loved ones who have 86 suffered, the new information may also create a sense of closure and provide some 87 answers. Balancing the need to inform people while creating an appropriate level of 3 I-3
    • 88 concern with the possibility of creating a significant level of unwarranted anxiety will 89 be an ethical and communications challenge. 90 ♦ The I-131 issue is competing with many other health issues that may be perceived to 91 be more current and pressing among health care providers and members of the 92 general public. 93 ♦ I-131 exposure and the potential health implications are complex issues marked by 94 scientific and medical uncertainties, and are difficult to communicate to the public in 95 non-scientific terms. Communications about this issue must include honest 96 descriptions of the uncertainties about exposure and potential doses, and honest 97 descriptions of uncertainties related to assessing past exposure and potential doses 98 received. Such communication can help build trust or may exacerbate a lack of trust 99 if it appears to “waffle” on the uncertainties. In addition, because these exposures 100 were involuntary and not fully disclosed for many years, reactions to related 101 information will likely be more negative. Therefore, risk communication principles 102 should be employed throughout the program. 103 ♦ Communications efforts involving American Indian audiences will have to be 104 sensitive to a heightened distrust of governmental messages and must be coordinated 105 with other government agencies based on the unique government-to-government 106 relationship with American Indian tribes. 107Opportunities 108 ♦ There are strong citizen networks and health professional organizations in the 109 communities that may support implementation of specific strategies in a 110 comprehensive communications plan. These networks include advocacy groups, 111 public health networks, and Internet communications networks. 112 ♦ CDG involvement will ensure that the communications plan is thorough and directed 113 to the most appropriate audiences. The CDG can also help brainstorm possible 114 organizational structures through which the messages can be disseminated. 4 I-4
    • 115 ♦ NCI has received a positive response to its efforts to involve the advocacy and the 116 health professional communities at the earliest possible stages in the development of 117 communications surrounding I-131. 118 ♦ Other agencies and organizations are involved in addressing I-131 exposure issues. 119 For example, ACERER (Advisory Committee for Energy-Related Epidemiological 120 Research) held a meeting to hear public input on the need for thyroid screening for 121 those exposed to I-131 from the NTS in June 2000. 122 ♦ The research group led by Annette O’Connor has expressed an interest in developing 123 a screening decision aid that may be one tool in the implementation of this 124 communications plan. One activity of the plan, therefore, could be to work with this 125 group to create and review such a tool. The feasibility will be explored for 126 developing a decision tree that could help those without health insurance find existing 127 programs that might assist them. 128 I.1.3 Communication Goals 129 ♦ Individuals who may have been exposed to I-131 radiation from the NTS will seek 130 the appropriate guidance of health care providers about the potential health effects of 131 exposure and what can be done to address these effects. 132 ♦ Healthcare providers will understand the risk of I-131 exposure and the potential 133 health effects and will be able to advise patients regarding their individual health 134 status, potential risks, and options. 135 I.1.4 Communication Objectives 136 ♦ To communicate to the intended audiences understandable information about the 137 release of I-131 from the NTS, the potential health effects of exposure, and what 138 exposed individuals can do about those effects. 139 ♦ To engage intended audiences in the issue and encourage individuals who are 140 concerned about I-131 exposure to consult with a health care provider or other 141 sources of health services. 5 I-5
    • 142 ♦ To inform health care professionals about the possible health effects of I-131 143 exposure and to provide information to assist them in working with patients who are 144 concerned about exposure. 145 I.1.5 Intended Audiences 146The Public 147 ♦ Individuals aged 40 and older, particularly those who lived in areas of highest 148 exposure and consumed milk, with special emphasis on underserved populations, 149 including minority groups and those with limited access to the health care delivery 150 system. 151Health Care Providers 152 ♦ Primary care providers 153 ♦ Thyroidologists 154 ♦ Obstetricians and gynecologists 155 ♦ Managed care organizations 156 ♦ Nurses and nurse practitioners 157 ♦ Providers in community health centers, migrant health clinics, and the Indian Health 158 Service 159 ♦ Psychologists and psychiatrists 160Others 161 ♦ Social workers 162 ♦ Advocacy and support groups 163 ♦ Community-based networks 164 ♦ Schools of Public Health 165I.1.6 Channels 6 I-6
    • 166 Members of the public, including those who may be at higher risk, may be reached 167 through a variety of channels, including: 168 ♦ Intermediary organizations such as environmental advocacy groups and downwinders 169 ♦ Community groups (especially in high-risk locations) 170 ♦ Health care providers (especially in high-risk locations) 171 ♦ State and local health departments, sliding scale clinics, community health centers, 172 and migrant health clinics 173 ♦ Bureau of Primary Care, Health Resources and Services Administration (HRSA) 174 ♦ Internet (NCI Web site and primary Internet health portals) 175 ♦ NCI’s Cancer Information Service (CIS) 176 ♦ Health-related federal agencies, e.g., Public Health Service, Indian Health Service, 177 CDC, Veterans Administration 178 ♦ American Indian Tribal Governments through collaboration and support of the Indian 179 Health Service and other federal agencies 180 ♦ Churches and other religious organizations 181How Health Care Providers May be Reached 182 ♦ Intermediary groups such as professional associations and their media (newsletters, 183 journals, etc.) 184 ♦ Professional meetings and continuing education 185 ♦ Internet 186 ♦ Health-related federal agencies, e.g., Public Health Service, Indian Health Service, 187 CDC, Veterans Administration, Health Care Financing Administration 188 I.1.7 Core Messages 189The Public 7 I-7
    • 190 ♦ Brief explanation that everyone in the United States during the time of the tests was 191 exposed to some level of I-131 and depending on individual risk factors, is at varying 192 health risk; description of potential health effects and their symptoms; and how to 193 determine exposure. Messages should also acknowledge that multiple I-131 194 exposures and exposure from other radionuclides were possible, although less is 195 understood about these other exposures. 196 ♦ Recommendation to consult with a health care provider to determine if any steps 197 should be taken to monitor and protect their health. (Information will be available to 198 guide people without health insurance to existing programs that may assist them.) 199Healthcare Providers and Others 200 ♦ Brief explanation that everyone in the United States during the time of the tests was 201 exposed to some level of I-131 and depending on individual risk factors, is at varying 202 health risk; description of health effects and their symptoms; and how to determine 203 exposure. 204 ♦ Suggestions for counseling patients with concerns about the health effects associated 205 with I-131 exposure. 206 ♦ Suggestions for assessing appropriate health precautions/monitoring. 207 ♦ Resources and references. 208 I.1.8 Message Tone 209 ♦ Compelling, motivating; not frightening 210 ♦ Empowering audiences to address their concerns 211 ♦ Credible, truthful, engaging 212 ♦ Not paternalistic 213 ♦ Compassionate 8 I-8
    • 214 I.1.9 Message Development Process 215 Message concepts were developed and tested with members of the intended audiences to 216 determine how to deliver the messages in the most useful way (after it is determined 217 what to say). Concept testing* is the type of research recommended in 218 communications planning after exploratory focus groups and before material 219 pretesting. A creative team then analyzed the responses to determine how messages 220 would be crafted so that audiences would understand and act upon them. 221 Once materials were created, they were pretested with appropriate audiences, including 222 underserved individuals without access to health providers. 223 I.1.10 Strategies and Tactics 224Create and activate existing community and grassroots networks, along with state and local 225health departments, to deliver program messages to identified audiences. 226 227The NCI completed the following: 228 ♦ Identified and created a contact list of potential organizations to include as a network 229 for program implementation. 230 ♦ Developed informational materials to be used at the local level by organizations 231 already involved with radiation exposure issues and those committed to public health, 232 including local health departments. By creating turnkey materials and kits, messages 233 were controlled and consistent. Community groups were encouraged to refer 234 individuals to the Cancer Information Service (CIS) for additional information, 235 answers to questions, and referrals to health provider services and other community 236 services for assistance. Final materials included: 237 o Get the Facts About Exposure to I-131 Radiation--This general 238 information brochure provides information about the Nevada tests and 239 identifies individuals at particular risk. 9* Message concepts, also called creative concepts, are simple graphics paired with headlines and taglines 10designed to elicit responses from audience groups and get them talking about the issue in very concrete terms. 11 I-9
    • 240 o Making Choices: Screening for Thyroid Disease*--This decision aid 241 workbook/brochure is for individuals concerned about their exposure to I-131 242 from fallout (This is based on decision support format of the Ottawa Health 243 Decision Center at the University of Ottawa and Ottawa Health Research 244 Institute, Ontario, Canada) 245 o Radioactive Iodine (I-131) and Thyroid Cancer*--This flip chart, designed 246 for use in small groups of up to 10 people, addresses concerns specific to 247 Native Americans. 248 o I-131 Website (www.cancer.gov/i131) 249 o Tools for partners* (“swiss cheese” press release, promotional brochure, web 250 blurb) 251 Provided technical assistance in communicating information about I-131 and the potential 252 health effects to public health departments in areas of highest exposure. 253 Developed materials to enable health professionals to respond to patient concerns about 254 potential I-131 exposure and to address the issue with patients who may have 255 received higher exposure. These materials are noted with a * above. 256 ♦ Worked with health professional organizations and their members to provide 257 information to patients who may be concerned about their exposure or who may be 258 unaware, yet subject to health complications from their exposure. 259 Worked with health care providers through their professional organizations (such as 260 medical societies) to raise their awareness of the issue and inform them about 261 materials available for their use. 1-800 phone numbers and Web addresses were 262 highlighted to help health care providers ask for or obtain materials. 263Enable audiences to access materials through multiple channels so that information is 264presented to them proactively but is also accessible upon demand. 12 I-10
    • 265 ♦ Developed an “I-131 web page” on the NCI Web site (www.cancer.gov/i131). The 266 page offers sections for consumers and health professionals. The decision aid and the 267 dose/risk calculator are also on the website. 268 ♦ Worked with key health information portals targeting health professionals and 269 consumers so that they can either provide a link to the NCI website or post the I-131 270 materials on their own site. 271 ♦ Provided information and training on the topic to the CIS regional offices, which 272 respond to telephone inquiries from consumers and professionals and conduct 273 community outreach on specific cancer-related issues. (Note: Individuals who do not 274 have easy access to the Internet are directed to the CIS which can provide them with 275 information about the tests at the NTS and the potential exposures and possible 276 subsequent health effects. The CIS is also a resource for referrals to other services, 277 such as counseling, for people who learn that they have cancer or other specified 278 health conditions, such as problems caused by exposure to I-131.) 279Collaborate with other federal agencies, components of the government and other 280organizations to achieve consistent communication about I-131 and the potential health 281effects and demonstrate the effectiveness of the planning process model. 282 ♦ NCI worked with key federal partners, including the Centers for Disease Control and 283 Prevention, the Agency for Toxic Substances and Disease Registry, the Department 284 of Defense, the Veterans Administration, the Department of Energy, the 285 Environmental Protection Agency, the Indian Health Service, Bureau of Primary 286 Health Care, and others. This effort was made to ensure consistent, inter-agency 287 communication and actions on related radiation issues and facilitate more information 288 sharing across agencies. (It is not foreseen that these agencies will help facilitate the 289 specific activities described in this plan.) 290 ♦ Coordinated and collaborated with Canadian organizations on the decision aid. 13 I-11
    • 291Use a phased approach to build momentum around the message and an opportunity for 292on-going evaluation. 293 The campaign implementation and evaluation is outlined on Page I-124. 14 I-12
    • 294Addendum A 295 296Cancer Information Service’s Role in I-131 Communication Plan 297 298Materials Distribution 299 ♦ The I-131 materials are available from the Publication Ordering Service and on the 300 Publications Locator on the Web. 301 ♦ Callers to the CIS are offered appropriate materials. 302Information Calls to 1-800-4-CANCER 303 ♦ CIS is now using information prepared by NCI to answer inquiries form the public. 304 ♦ CIS makes referrals to health care professionals according to its current referral 305 policy. (Note: CIS does not make referrals to individual physicians, only to NCI 306 sponsored programs.) 307 ♦ CIS does not use any of the modeling techniques to perform risk assessments for 308 callers. 309Referrals to Other Services 310 ♦ CIS has referral information for cancer screening, treatment, pain, and indigent care. 311 CIS refers to other community/national organizations for support services; CIS does 312 not maintain referrals for support groups or other local counseling services. If other 313 specific referrals are necessary for this project, they would need to be provided to 314 CIS. 315Outreach 316 ♦ The CIS Partnership Program distributes I-131 materials to the state, regional, and 317 community/local organizations it routinely works with. 15 I-13
    • 318Addendum B 319 320Other Suggestions from the CDG 321 This document includes issues that cannot be addressed within the scope of the NTS 322 I-131 Communications Plan, but will be shared with other governmental agencies. 323 ♦ Develop a pilot project for addressing multiple exposures to I-131 as well as exposure 324 to other radionuclides. This communications plan focuses on exposure to I-131 from 325 NTS, but may be used as a model for future efforts, if deemed scientifically feasible 326 and appropriate. 327 ♦ Provide cost reimbursement for screening and/or medical costs associated with 328 exposure to I-131 from the NTS, exposure to other radionuclides from NTS, and 329 exposures to I-131 and other radionuclides from multiple sources, including “global” 330 nuclear testing and radiation releases from United States nuclear facilities. 331 ♦ Develop an Information Resource Center similar to the Hanford Health Information 332 Center with a 1-800 number, Health Information Network, and On-line Exposure 333 Health Database. This would enable people to get information, get connected, and 334 get help accessing ancillary services, such as support and counseling. 335 ♦ Develop an NTS Fallout Health Effects Subcommittee and an NTS Fallout Health 336 Information Network originally proposed in Utah House Concurrent Resolution 10. 337 ♦ Provide training or “train the trainer” sessions on exposure and screening to enhance 338 community-based efforts. 339 ♦ Provide counseling/support services (or cost reimbursement) for people who learn 340 that their health has been affected by I-131 from NTS. 341 ♦ Incorporate new ACERER recommendations into the plan once they are formally 342 recommended and approved by the Department of Health and Human Services. 16 I-14
    • 343 344 I.2 Workshop Agenda 345(see next page) 17 I-15
    • 346 347 Workshop Agenda 348 349 January 19-21, 2000 350 351 Wednesday, January 19 – Briefing Day 352 9:00 a.m. – 9:30 a.m. Arrival and Check-In Session A 9:30 a.m. – 10:00 a.m. Opening Session Welcome and Charge to Group Alan Rabson, M.D. Mike Sage, M.P.H. Ground Rules and Introductions Denise Cavanaugh, Facilitator Session B 10:00 a.m. – 10:45 a.m. Broad Overview and History Mark Epstein, Moderator Brief NTS History Mark Epstein A Citizen’s Perspective Trisha Pritikin, Esq., M.D., O.T.R. IOM Report Robert Lawrence, M.D. 10:45 a.m. – 11:00 a.m. Break Session C 11:00 a.m. – 12:30 p.m. The Science of I-131 Exposure and Health 1. What Can Science Tell Us About the Charles Land, Ph.D. Health Risks of I131? 2. What I-131 Doses Did People Receive Steve Simon, Ph.D. From NTS Fallout? 3. Reflections From and Independent Owen Hoffman, Ph.D. Scientist on the Science of I-131. 12:30 p.m. – 1:45 p.m. Lunch Session D 1:45 p.m. – 2:15 p.m. Public Health Communications Challenge Elaine Arkin Session E 2:15 p.m. – 3:00 p.m. Table Discussions Denise Cavanaugh 3:00 p.m. – 3:15 p.m. Break 18 I-16
    • 353 Wednesday, January 19 – Briefing Day (Continued) Session F 3:15 p.m. – 5:15 p.m. Communications Challenge: Group Discussions 1. Interest Group Perspectives Moderator Seth Tuler State/Local Advocacy Organization J. Truman National Advocacy Organization Maureen Eldredge Physician Advocate Tim Takaro, M.D. Native American Robert Holden Ground Zero Lincoln Grahlfs, Ph.D. Consumer Organization Jean Halloran 2. Health Provider: Channels and Gatekeepers Moderator Kevin Teale, M.A. Practitioner R. Michael Tuttle, M.D. Sliding Scale Clinic Delvin Little, M.D. Medical Specialty Group Henry Royal, M.D. Risk Communicator Jim Flynn, Ph.D. Medical Ethicist Kristin Shrader-Frechette, Ph.D. Session G 5:15 p.m. – 5:45 p.m. Wrap-Up Denise Cavanaugh 5:45 p.m. – 6:30 p.m. Break Session H 6:30 p.m. – 9:00 p.m. Networking Reception and Dinner 19 I-17
    • 354 Thursday, January 20 – Discussion Day 355 7:30 a.m. – 8:30 a.m. Continental Breakfast Session I 8:30 a.m. – 8:45 a.m. Summary of Day 1 and Charge for Day 2 Denise Cavanaugh Session J 8:45 a.m. – 10:15 a.m. Screening/Medical Monitoring Denise Cavanaugh Mark Epstein Moderators 1. What Recommendations and Current Robert Spengler, Sc.D. Programs Exist for Screening and R. Michael Tuttle, M.D. Monitoring? 2. Assessing Individual Risk Keith Baverstock, Ph.D. Owen Hoffman, Ph.D. 3. A Model for Individual Decisionmaking Valerie Fiset, R.N., M.Sc.N. 10:15 a.m. – 10:30 a.m. Break Session K 10:30 a.m. – 12:00 noon Table Discussions: What do we know that we can use to begin developing messages and defining populations? What do we need to know to develop and effective campaign? What questions should be forward for April screening forum? 12:00 noon – 1:15 p.m. Lunch Session L 1:15 p.m. – 3:30 p.m. Developing Model Outreach 1. Strategies for Message Development Peter Sandman, Ph.D. An approach to identifying Target audiences Considerations for developing Science- Neil Weinstein, Ph.D. based messages 2. Audiences Research Results Ed Maibach, Ph.D. Presentation of preworkshop research 3:30 p.m. – 3:45 p.m. Break 20 I-18
    • 356 Thursday, January 20 – Discussion Day (Continued) Session M 3:45 p.m. – 5:15 p.m. Developing Model Outreach (Continued) 3. Table Discussions Ed Maibach, Ph.D., Facilitator What additional audience research Is needed? Session N 5:15 p.m. –5:45 p.m. Wrap-Up Denise Cavanaugh Identify agreements and outstanding issues. Move forward on a communications plan. Friday, January 21 – Input Day 7:30 a.m. – 8:30 a.m. Continental Breakfast Session O 8:30 a.m. – 9:00 a.m. Summary of Day 2 and Charge for Day 3 Denise Cavanaugh Review Operating Principles Session P 9:00 a.m. – 11:00 Breakout Session Topic Decided on Thursday Afternoon 10:00 a.m. – 10:15 a.m. Break Session Q 11:00 a.m. – 12:00 noon Reports From Breakout Session Group Reporters 12:00 noon – 1:00 p.m. Lunch Session R 1:00 p.m. – 2:00 p.m. Summary James Mathews/Kellie Marciel Joan Morrissey Next Steps Nelvis Castro Owen Devine Session T 2:00 p.m. – 2:15 p.m. Closings Comments and Thank You to Alan Rabson, M.D. Participants 357 21 I-19
    • 358 359 I.3 Workshop Summary 360 361 I-131 Fallout from NTS: Informing the Public 362 January 19-21, 2000 363 364 Workshop Summary 365 366 367On January 19-21, 2000, a workshop titled “I-131 Fallout from NTS: Informing the Public” 368was held in Rockville, Maryland. It was sponsored by the National Cancer Institute (NCI) 369and the Centers for Disease Control and Prevention (CDC) and planned in consultation with 370a working group of citizen representatives and state health department staff. This report 371summarizes the workshop proceedings for the benefit of participants and other interested 372individuals and organizations. 373 ♦ Section I.3.1 - Workshop Proceedings 374 ♦ Section I.3.2 - List of Working Group members and government staff 375 ♦ Section I.3.3 - Workshop Participants 376 ♦ Section I.3.4 - Proposed Campaign Operating Principles 377 ♦ Section I.3.5 - List of Other Resources 378 379 380The working group designed the workshop with five outcomes in mind: 381 3821. Obtain input for the ongoing process of campaign development and implementation, 383 including the structure for continued public participation in the process. 3842. Get input on target audiences and a process for developing messages. 3853. Get suggestions for additional audience research. 3864. List the scientific questions that still need to be addressed, including suggestions for an 387 April workshop on screening to be hosted by the Advisory Committee for Energy- 22 I-20
    • 388 Related Epidemiologic Research (ACERER), which advises the Department of Health 389 and Human Services (DHHS) on radiation research1. 3905. Identify ways to leverage this model process to benefit subsequent efforts on the full 391 range of health effects from radionuclides released from the Nevada Test Site (NTS). 392The workshop brought together affected citizens, consumer advocates, physicians, scientists, 393health department representatives, risk communicators, and government officials. Some had 394a long history with radiation fallout issues; others were new to the field but experienced in 395communications or reaching specific at-risk populations. 396By the end of the three-day workshop, participants agreed on a set of campaign goals, 397provided organized feedback on four areas of campaign development, and developed a 398“wish list” of outcomes they would like to see in the near and distant future. 231 At the time of the workshop, it was anticipated that the ACERER meeting to address screening issues would 24be held in April 2000. The meeting has since been scheduled for June, 2000. 25 I-21
    • 399 400 I.3.1 Workshop Proceedings 401 I.3.1.1 Day One 402 403Opening and Introductions 404The workshop was opened by Alan Rabson, M.D., Deputy Director of the NCI, and Mike 405Sage, M.P.H., Acting Deputy Director of the National Center for Environmental Health at 406the CDC. They charged the group with providing input to NCI and CDC in the development 407of a communications program that will 1) inform the public, and more particularly, the 408members of the public who are at high risk for health problems because of their exposure to 409radioactive iodine-131, and 2) educate health providers so they can provide appropriate care. 410The challenge will be to figure out how best to communicate the history, the science, and the 411possible health risks from exposure to radioactive iodine-131 from the Nevada Test Site. 412Dr. Rabson noted the active interest of the Department of Health and Human Services 413(DHHS), acknowledging the presence of Dr. William Raub, representing DHHS Secretary 414Donna Shalala. 415Denise Cavanaugh, the workshop facilitator, reviewed the ground rules and desired 416outcomes for the workshop. She reiterated the desire to identify some common ground, to 417provide scientific background, history on the issue, and to discuss the communications 418challenges and strategies that might be employed in the campaign. Ms. Cavanaugh 419encouraged participants to use the listserv set up by NCI to interact and give additional 420feedback after the workshop. A handout was provided with directions on how to subscribe 421to the listserv. Ms. Cavanaugh also pointed out the Operating Principles drafted by the 422working group. 26 I-22
    • 423Overview and History 424Mark Epstein of Porter Novelli, Washington, D.C., gave a brief overview of the history of 425the Nevada Test Site, referring participants to the Institute of Medicine (IOM) Report2 and 426working group member Trisha Pritikin’s document3 for further details. 427Robert Lawrence, MD, of Johns Hopkins University, and chair of the IOM Committee that 428reviewed NCI’s report4 on I-131 dose estimates, offered a brief presentation of the IOM 429Report. He focused on the factors that contribute to individual dose estimates and the 430problems in making estimates due to geographic variation, dietary patterns, and individual 431susceptibility. He agreed that excess cases of thyroid disease were caused by radioactive 432fallout, but he asked whether trying to identify individuals who are at greatest risk and 433screening them would lead to greater harm than good. And so, the IOM committee took the 434approach “first, do no harm,” in recommending against mass screening for thyroid cancer. 435He encouraged the group to work toward a communications program that focuses on shared 436decision-making between individuals and their health care providers. 437Trisha Pritikin, a member of the working group, brought the perspective of a citizen exposed 438to NTS fallout and environmental ionizing radiation emissions, including I-131, from the 439Hanford nuclear weapons facility. She noted that radioiodine is only one of a host of 440biologically significant radionuclides released during the NTS nuclear bomb tests. She 441asked that this I-131-focused campaign be followed by similar campaigns on other NTS 442radionuclides. She called for an appropriate government response to these involuntary 443environmental exposures. She also encouraged a discussion of government-sponsored 444screening for those at highest risk from their childhood exposures, as is anticipated to occur 445at an upcoming ACERER meeting. 446Ms. Pritikin detailed the impact of radioactive fallout on her family, describing her illness 447and the death of both of her parents. She grew up in Richland, Washington, adjacent to the 272 Exposure of the American People to Iodine-131 from Nevada Nuclear Bomb Tests: Review of the National 28Cancer Institute Report and Public Health Implications. 1999. National Academy Press: Washington, DC 293 Ms. Pritikin was a Working Group member who prepared a document, “NTS History,” which was included in 30the packet of materials for workshop participants. 314 Estimated Exposures and Thyroid Doses Received by the American People from Iodine-131 in Fallout 32Following Nevada Atmospheric Nuclear Bomb Tests. 1997. U.S. Department of Health and Human Services, 33National Institutes of Health, National Cancer Institute. 34 I-23
    • 448Hanford nuclear weapons facility. She called for estimates of cumulative exposures and 449risk, based on multiple radioactive exposures such as NTS, Hanford, and global fallout. She 450also called for discussion of all potential health outcomes, including thyroid cancer, 451autoimmune thyroiditis, hypothyroidism, hyperthyroidism, hyperparathyroidism, and other 452related diseases. She noted that screening for non-cancer outcomes involves a simple blood 453test, which has a different benefit/risk ratio than thyroid cancer screening. 454At the completion of her presentation, Ms. Pritikin read from the written and oral transcripts 455of the Hearing before the Senate Permanent Subcommittee on Investigations of the 456Committee on Governmental affairs, citing Senator Tom Harkin’s support for medical 457screening for those at highest risk from NTS I-131 exposures, and citing his disagreement 458with the recommendations against screening made by the IOM committee that reviewed the 459NCI I-131 report. Dr. Lawrence, chair of the IOM committee, responded by stating that he 460had spoken with senior members of Senator Harkin’s staff regarding these IOM 461recommendations, and that those staff members then indicated that they understood why the 462IOM made the recommendations it did. 463The Science of I-131 Exposure and Health 464Charles Land, Ph.D., of NCI’s Division of Cancer Epidemiology and Genetics, explained 465how NCI developed its estimates of exposure and explained why children were at higher 466risk than adults: children are more sensitive to radiation; their thyroid glands receive higher 467doses from ingested or inhaled I-131. They have a higher intake of milk (the main pathway 468of ingestion), and higher metabolism. 469Steve Simon, Ph.D., of the National Research Council’s Radiation Effects Research Board, 470described dose estimates. He explained how dose is calculated and described how 471uncertainty is factored in. He also showed a number of maps that showed the high exposure 472areas, or “hot spots,” by birth year. 473Both speakers described the complexity of estimating exposure and doses and the limitations 474of the sources of I-131 exposure information from the 1950s and 1960s, based on the time of 475year, weather patterns, cow grazing patterns, dairy management practices, etc. Dr. Simon 476explained the difficulties in coming to individual dose estimates, which rely on the accuracy 35 I-24
    • 477of the person’s memory of where they were and what they were doing during the testing. 478County-specific estimates already carry a high degree of uncertainty. Individual estimates 479are more uncertain, still. 480F. Owen Hoffman, Ph.D., from SENES Oak Ridge, Inc., shared his perspective. He stated 481that, although the risk from exposure to iodine-131 is uncertain, it does not prevent us from 482estimating risk. The uncertainty can be quantified, allowing an estimated range of 8,000 to 483208,000 excess cases of thyroid cancer due to NTS fallout. He suggested that most of the 484excess cases would occur in females who were children at the time of the testing and who 485resided in the eastern United States because that was where the population was most dense 486and where the most milk was produced. 487Age, gender, and diet are more important determinants of risk than is location, said Dr. 488Hoffman. He also noted the need to bring together dose reconstructions from various 489sources of fallout to estimate cumulative doses. He also called for work to extend 490discussion beyond iodine-131 to other radionuclides in both NTS and global fallout. 491Dr. Hoffman argued that health risk evaluations with regard to fallout should include more 492health effects than thyroid cancer, such as benign nodules and autoimmune thyroiditis. He 493also urged that other I-131 exposure sources and time periods beyond 1962 be investigated, 494including the underground testing era. 495Dr. Hoffman also reported that there is now a more sophisticated method of calculating the 496uncertainty associated with dose estimates than what was used in the NCI online dose 497calculator. Calculations using the “Monte Carlo” method take into account the adding of 498uncertainties from disparate time periods, and result in smaller uncertainty ranges. 499Public Health Communications Challenge 500Elaine Bratic Arkin, a health communications consultant, defined health communications 501and social marketing, using a CDC definition: “the crafting and delivery of messages and 502strategies based on consumer research to promote the health of individuals and 503communities.” Communications can prompt people to take simple actions, like call a toll- 504free number or make an appointment with a doctor. It can correct misconceptions, and it 36 I-25
    • 505can coalesce relationships. She said that the campaign’s challenges include the public’s 506complacency (since these exposures happened decades ago), a media environment cluttered 507with health messages, and a very complex topic to convey to the public. 508To be successful, the communications campaign needs to be planned, budgeted and 509supported over time, Ms. Arkin stated. It needs to be tracked and evaluated in case 510adjustments are needed. It may need to be part of a multifaceted program, coupled with 511provision of services and physician education, for example. She also described the 512components of a communications plan. 513Table Discussions 514Small group discussions following Ms. Arkin’s presentation focused on two questions: what 515is the issue, and what one change might advance the effort? Some of the issues and actions 516discussed: 517 ♦ Lack of trust in the government 518 ♦ The government must accept accountability for past events and future actions. 519 ♦ The program should be comprehensive instead of separating nuclear fallout from 520 mining, milling, production, waste, and weapons use. In other words, the public 521 wants to know about isotopes beyond I-131 and exposures beyond Nevada Test Site. 522 ♦ There are two public health issues here: the actual physical impact of exposure and 523 the psychological stress induced in people by the exposure. 524 ♦ How will we help people who are mobile and speak a language other than English 525 understand the risk? 526 ♦ We’ve got to make clear there was an impact, even if we are uncertain about the 527 magnitude. 528 ♦ There is a need to educate physicians so they will take patients’ complaints and 529 concerns seriously. If a doctor is honest and up-front, the patient will have less fear 530 and uncertainty. 37 I-26
    • 531 ♦ Physicians must be contacted before a public campaign is launched. We need to get 532 the attention of primary care physicians and get health care providers, such as HMOs, 533 on board. 534 ♦ It may be difficult to identify a credible source for the information, due to issues of 535 mistrust. 536 ♦ There are two components: a notification piece, to educate and reduce fear, and a call 537 to action so that high-risk individuals will seek medical advice, which would include 538 educating physicians to be prepared to respond. There also may need to be some kind 539 of direct help for the affected citizens from the government. 540 ♦ Give people a full view of their risk from a combination of sources. 541 ♦ Give people the information they need about risk factors so they can determine their 542 own risk level and then give them information on obtaining follow-up consultation or 543 care, if needed. 544Panel 1: Interest Group Perspectives 545Working group member Seth Tuler, Ph.D., of the Childhood Cancer Research Institute and 546Clark University, moderated the workshop’s first panel discussion. Dennis Nelson, Ph.D., 547of Support and Education for Radiation Victims (SERV), described the lifestyle of the 548downwinder population near the Nevada Test Site to give a sense of the downwinder’s 549exposure. He argued against focusing exclusively on I-131 and cancer and called for a 550national plan to notify people throughout the country so that they could look into their own 551exposures and seek early detection. 552Maureen Eldredge of the Alliance for Nuclear Accountability described her organization’s 553relationship with the government on nuclear weapons issues as a pattern of deceptions and 554cover-ups. She stated that the government has an obligation to tell the public that they were 555involuntarily and unknowingly exposed, regardless of how low the exposure or how 556minimal the health risk. She suggested also looking at all thyroid disease, not just cancer, 557and helping people figure out their cumulative doses so they have the full picture of their 558exposures. It is not up to the government to decide what information people should or 559shouldn’t have because they might make a bad decision with all the information. People 38 I-27
    • 560should make their own decisions about their health care. Lastly, she said that we should be 561aware of the impact of money. She said the government might be fearful of providing 562information out, as people who were exposed may sue the government, whether or not they 563suffered any ill consequences of exposure. She said the government should pay for the 564communications, the training and education of health providers, and perhaps even for 565treatment. 566Tim Takaro, MD, of the University of Washington, represented Physicians for Social 567Responsibility. In his experience with Hanford, the people in the Northwest want to know 568about their families’ illnesses. They want to know if they are at risk, whether they should be 569tested, and whether their children may be affected. He noted the importance of cumulative 570doses and called for looking at exposure from mining through weapons disposal. At the 571same time, physicians don’t need to get an accurate dose on a patient to address concerns 572about risk for certain diseases based on their exposure from Hanford, NTS, and others. He 573noted that screening large populations with no restrictions is not cost effective, but that 574screening should not be denied a person who is concerned about his health and the impact of 575radiation exposure. Physicians will need to address patient anxiety, which in itself is a 576psychological and physiologic burden. 577Robert Holden, of the National Congress of American Indians, discussed the history of the 578relationship between the federal government and native peoples, stating that the government 579has a responsibility, based on treaties, to provide for Indian health and welfare. Many 580Native Americans had multiple exposures. For example, uranium was mined on Navajo 581land and a national laboratory sits on Pueblo land. He noted that there are certain protocols 582to communicate with tribal officials. He stated that he hopes that the Native American 583community can continue a relationship with those planning this campaign to help them 584better understand Native Americans. He suggested a Native American caucus to work on 585these issues. 586F. Lincoln Grahlfs, Ph.D., is an atomic veteran representing the National Association of 587Radiation Survivors. He described his experience educating Congress that nuclear radiation 588is hazardous and getting the word out about the NCI report. His group’s media work got 39 I-28
    • 589tremendous response in areas like St. Louis, Missouri, and Idaho Falls, two “hot spot” areas 590identified in the report. He warned that special interest groups might try to sabotage efforts 591to educate the public on issues of radiation exposure and health risks. 592Mike Hansen, Ph.D. represented Jean Halloran from Consumer’s Union. From his 593background working on advocacy issues on pesticides and genetically engineered foods, he 594stated that the government will have to do a few things to gain credibility: 1) take a 595comprehensive view, broader than I-131 and all potential health effects, 2) provide as much 596information as possible, and 3) admit the government was wrong. Even if the risk is small, 597the public will get upset at risks that were involuntary, that they had no control over, and 598that were done to them without their knowledge. The government will need to be upfront 599about what happened and how much they don’t know. They’ll need to work with grassroots 600organizations and those advocacy organizations that are critical of the government in order 601to make the campaign successful. The process will be difficult, but important. He 602suggested working with Consumer Reports magazine to write an article on this topic. 603Dissemination would be widespread, with a readership of 4.8 million subscribers in their 50s 604and 60s. 605Seth Tuler ended the panel by discussing the findings of the ACERER’s subcommittee for 606community affairs. 1) Federal efforts to address the public health consequences of NTS 607fallout are still inadequate. 2) Difficulty identifying specific fallout injuries does not absolve 608the federal government of its responsibility to shape a meaningful public health response. 3) 609Research is not a public health response and is not a substitute for the assistance that many 610exposed people believe that the government has a responsibility to provide. 4) Delays in 611sharing important public health information about fallout exposures have reinforced public 612cynicism toward federal officials. 613He then reviewed the ACERER’s recommendations: 1) Fulfill the legislative intent of Public 614Law 97-414, which mandated NCI’s study of I-131 NTS fallout; 2) Complete a 615comprehensive dose reconstruction project for NTS fallout, with an oversight committee 616created to keep things on track; 3) Notify Americans of the factors that might help them 617determine if they received significant radiation doses from NTS fallout, targeting high-risk 40 I-29
    • 618groups; 4) Create a public and health care provider information service; 5) Support an 619archival project to document the experiences of exposed people; 6) Further evaluate 620screening opportunities for thyroid disease. 621He finished by summarizing the common themes heard during the panel discussion. 622 ♦ The legacy of mistrust 623 ♦ Identifying who is at high risk and providing more to them than mere notification 624 ♦ Empowering people to make informed decisions about their health care 625 ♦ Addressing fears versus creating fears 626 ♦ Covering multiple exposures and contaminants 627 ♦ Overcoming political resistance to implementing programs 628Panel 2: Health Provider Channels and Gatekeepers 629The final panel on the first day of the workshop included health professionals and 630gatekeepers. Kevin Teale, of the Iowa State Health Department, moderated. He began by 631pointing out the challenge the group faces in trying to get a message about this complex 632topic out to the broadcast media, which relies on four-second sound bites. He also raised the 633issue of getting the public to pay attention to the risk, when they already don’t pay attention 634to some of the big health risks like smoking or weight control. 635R. Michael Tuttle, M.D., from Memorial Sloan-Kettering Cancer Center, is a practicing 636thyroid specialist. He treats patients with thyroid disease, many of whom already ask him 637about radiation exposure and their disease. He sees a big challenge in translating excess 638relative risk, radiation dosage, and other relevant technical jargon into something 639meaningful to tell a patient. The program will have to help physicians define who is high- 640risk and help them discuss risk in a way that makes sense to their patients, which may vary 641by geographic location and cultural background. It must give physicians a strong scientific 642rationale for determining whether a patient is at risk or not. 643Henry Royal, M.D., of the Washington University School of Medicine, was a member of the 644committee that wrote the IOM Report. He contrasted the public health perspective, which 41 I-30
    • 645shows that thyroid cancer accounts for just 3% of all cancer deaths, with the personal, 646devastating perspective of a family member dying of thyroid cancer. He advocated 647allocating limited health care resources where they can have the greatest impact to reduce 648premature deaths. He acknowledged the difficulty in taking this view when individuals are 649dying of thyroid cancer, but shifting public health resources to a program that would have a 650small public health impact would cause others to needlessly suffer the tragedy of premature 651death. 652Delvin Littell, M.D., of the Morgan County Medical Center, adjacent to Oak Ridge, 653Tennessee, encouraged the group to work with the organizations of community health 654centers, clinics that reach low-income individuals. In particular, he noted that the migrant 655labor movement might offer a resource of particular use with people who don’t trust “the 656system.” He also advised that communicators keep in mind how they would like to be 657treated when developing messages and strategies to reach the public. 658James Flynn, Ph.D. Decision Research, talked about risk communications, explaining that 659the messages developed for this campaign will be going to people who will receive them 660within the context of suspicion of nuclear technology as well as their personal experiences 661and preformed judgments. These factors will affect the way they receive and respond to the 662messages. 663Kristin Shrader-Frechette, Ph.D., of the University of Notre Dame, provided a medical 664ethicist’s perspective. Two things she says have gone wrong with risk communication about 665radiological hazards are: the tendency to present scientific opinion as if it were fact and the 666tendency to make covert ethical judgments as if they were scientific judgments. She used 667the example of the IOM report recommending against mass screening because of the benefit 668to harm ratio. That’s a value judgment that takes away individual rights. In a democracy, 669people have the right to know, the right to compensation, to due process, and to self- 670determination. People have the right to make mistakes for themselves. Lastly, she stated 671that, to communicate in a credible way, the government will have to state that this will not 672be repeated. People are willing to forget the past if we can assure them that what they went 673through in the past is not going to happen again. Deciding about screening is not just a 42 I-31
    • 674scientific issue, it is an ethical issue and several members of the public should be involved in 675the decision-making. She recommended using the 1996 National Research Council report, 676Understanding Risk: Informing Decisions in a Democratic Society, as a way to improve risk 677communication and involve the public in a meaningful way. She also argued that the 678government is obligated to take responsibility and spend health care dollars on this issue, 679even if it involves diseases with small public impact because the government is accountable 680for the radiation fallout and its impact. 43 I-32
    • 681 682 I.3.1.2 Day Two 683Screening/Medical Monitoring 684Day Two began with a session on Screening and Medical Monitoring. Robert Spengler, 685Sc.D., of the Agency for Toxic Substances and Disease Registry, and R. Michael Tuttle, 686M.D., reviewed existing recommendations and programs for screening and monitoring. 687They provided a handout that described the recommendations of various interested 688organizations and studies. Dr. Spengler also presented the proposed Hanford Medical 689Monitoring Program, which is not yet funded. He discussed recent revisions to the proposed 690program that address and reduce the potential harms of thyroid cancer screening expressed 691in the IOM report. In addition, he submitted documents on the proposal and revisions to 692NCI as handouts for the participants. 693Keith Baverstock, Ph.D., of the World Health Organization, Helsinki, Finland, and Owen 694Hoffman, Ph.D., talked about assessing individual risk. Dr. Baverstock discussed the value 695of estimating individual risk, and the limitations of such estimates. He presented the 696NAS/IOM scheme for describing individuals’ risk as falling into three non-numerical 697categories. Individuals born after the cessation of testing are not at risk; individuals over 18 698at the time of testing are at very low risk. For other age categories, the NAS/IOM 699recommends that DHHS develop a method for calculating an individual “score”—for 700purposes of categorizing only, not as a numerical expression of risk—that takes into account 701location, milk consumption, milk source, and gender differences. The resulting scores 702would then be linked to recommendations for appropriate actions for individuals in each 703category. 704Dr. Hoffman discussed the identification of high-risk sub-groups. He suggested the 705following criteria be used to determine high-risk status: those in childhood at the time of 706atmospheric testing, goat’s milk drinkers, those with a family history of thyroid cancer or 707other thyroid abnormalities, and those with estimated doses above a given decision level. 708Dr. Hoffman emphasized that for the case of goat’s milk drinkers who were children during 709the testing period, enough is known already to classify them as high-risk, without further 44 I-33
    • 710dose refinement. He highlighted the inherent uncertainty of individual dose estimates and 711proposed that decisions be based on either the upper or lower bound of confidence on the 712dose estimates, and suggested a detailed framework for doing this. 713Valerie Fiset, R.N., M.Sc.N., of the Sisters of Charity Ottawa Health Service, Ontario, 714Canada, presented a model for helping people make difficult health-related decisions. 715Decision aids walk patients, with their health care provider, through steps that help them 716look at options available, the potential outcomes of those options, then help the patient 717consider their values in relation to those options. Decision aids are used when the outcomes 718of the options are not very well known and the patient needs to judge the value of the 719benefits and risks. They are also useful when there is practice variation around a screening 720or treatment option. Her group has developed decision aids around chemotherapy for 721advanced lung cancer, hormone replacement therapy, and lumpectomy versus mastectomy 722for breast cancer treatment. 723At this point, participant discussion began. Audience members were looking for 724clarification of the scope and goals of the campaign. Some expressed frustration with the 725government’s past record on radiation issues and skepticism that things would change. 726Denise Cavanaugh, the workshop facilitator, asked the group to make recommendations and 727to develop a “wish list” of outcomes for the campaign. They are listed below. 728General Recommendations 729 ♦ Move forward with a campaign. Do not wait until all of the science is in. Talk about 730 what you know and explain that more information on dose and associated risks will 731 be provided when feasible. 732 ♦ Educate the “publics” about the basics of radiation fallout, exposure (from individual 733 facilities, and globally), and health impacts, while giving a sense of the complexity of 734 the information. 735 ♦ Keep public representatives involved as partners. 45 I-34
    • 736 ♦ The participants agreed on a framework to discuss I-131 first and then additional 737 radionuclides, as information becomes available. That framework was called: “Public 738 Health Legacy of Nuclear Production, Research, and Testing.” 739“Wish List” of Activities 740Near Future (3 months) 741 ♦ A communications plan with financial support. 742 ♦ A decision about access to federally sponsored screening for uninsured and 743 underinsured populations. 744 ♦ Inclusion of state health departments in campaign development and implementation. 745 ♦ Partnership with Native American tribal governments in developing the campaign. 746 ♦ Use of the listserv as an interactive communications tool for discussion and review of 747 draft planning documents. 748 ♦ Consideration of a resource center with a toll-free number, i.e., an entity responsible 749 for delivery of information. 750 ♦ Development of an archive (or expansion of existing archives around the country) of 751 documents and resources pertaining to the NTS and resulting exposures, in keeping 752 with the ACERER recommendation. 753 ♦ Continuation of relationships built at the January 2000 Workshop. 754 ♦ Government acknowledgment of the legacy of nuclear production, research, and 755 testing and commitment to prevention in the future. 756 ♦ A clear set of recommended actions for the public to take with regard to exposure. 757 ♦ Study of the ongoing health effects of existing nuclear action. 758Distant Future (36 months) 759 ♦ Outreach to communities. 760 ♦ Outreach to federal agencies. 761 ♦ Physician education implementation. 46 I-35
    • 762 ♦ Evaluation of campaign implementation. 763 ♦ Benchmarks for physician education, etc. 764 ♦ Development of cultural- and language-appropriate messages/materials for special 765 populations. 766 ♦ Addressing additional radionuclides. 767 ♦ American public understanding fallout and health legacy. 768Developing Model Outreach 769Peter Sandman, Ph.D., a risk communications consultant, explained the difference between 770hazard (how dangerous something is) and outrage (how much it upsets people) and the fact 771that they are often poorly correlated. He suggested a two-pronged campaign. One audience 772is people who are significantly endangered by NTS fallout and deserve a warning. The 773second audience is the larger public whose hazard is low. He offered five options for 774messages to them, ranging from doing what you can to keep them from becoming outraged 775to getting them outraged to organize them politically. He suggested that the diverse interests 776in the room could work together on a campaign to reach those who are high risk, but would 777probably need to work separately to communicate to the larger public, since their goals 778would likely vary. 779Regardless of how hazardous the fallout is to the public’s health, Dr. Sandman noted that 780public outrage over nuclear fallout should be expected and is justified based on a list of 781twelve factors, including the involuntary nature of the exposure and the government’s 782unresponsiveness to public concern. He said that in order to be credible, the government 783must acknowledge the outrage and admit that it is justified. He ended by saying that the 784government should apologize a lot; overestimate, rather than underestimate the risk; show 785concern, feeling and humanity; and acknowledge the moral relevance of the situation. 786Neil Weinstein, Ph.D., of Rutgers University, discussed the challenges involved in 787communicating about risk, based on his experience with radon and other programs. He 788talked about the public’s difficulty in understanding numbers and probabilities and the 789likelihood that people will be apathetic to the message that a health risk has occurred. He 47 I-36
    • 790also warned against providing too much information in an effort to enable people to make 791their own informed decisions. He advocated giving recommendations for action with 792sufficient background information, without flooding people with all the details on dosing, 793probabilities, and the science of I-131 exposure. 794Ed Maibach, Ph.D., of Porter Novelli, presented the results of six focus groups held with 795consumers and physicians to begin getting a sense of their knowledge and attitudes about 796radiation fallout and health risks, to understand their perceived risk, their degree of concern, 797and to understand their needs for information on these issues. The participants were drawn 798from two cities with a high exposure to I-131 and one with a lower exposure. The 799preliminary report was provided at the meeting. 800 ♦ The consumers in both areas showed little concern about radiation fallout, had little 801 interest in something that occurred in the past, and were more concerned by health 802 issues they face today. But there was great passion for securing assurances that the 803 tests never happen again. People wanted to know the big picture about the 804 consequences of NTS testing rather than just about I-131. 805 ♦ The physicians knew very little about nuclear testing and its health impacts. They 806 called for a permanent ban on nuclear testing. They asked that a public education 807 campaign not be mounted because it would create a mess without helping the public. 808 They said a physician campaign might be a good idea, though they weren’t convinced 809 it would change their clinical practice at all. 810Dr. Maibach ended by reminding the workshop participants that this was just the beginning 811of the audience research needed to develop a campaign. During the question and answer 812period following the presentation, workshop participants noted the likelihood that focus 813group responses were tied to the source and format of the information stimulus they 814received. It was pointed out that this should be taken into account in locating appropriate 815“messengers” for delivering exposure information to the public. Later in the workshop, the 816participants spent time discussing additional audience research needs. 817Campaign Goals 48 I-37
    • 818Following the audience research presentation, workshop participants developed four goals 819for the communication campaign, which received wide support: 8201. Acknowledge/explain what happened as a result of nuclear weapons production, 821 research, and testing and what is happening now. Engage or encourage the public in a 822 policy discussion on this issue. 8232. Educate the public on the potential health consequences of I-131 and other radiation 824 exposures so they can make good decisions. Provide mechanisms for follow-up (e.g. 825 toll-free number) for people without a health care provider. 8263. Educate health care providers about the health consequences of I-131 fallout and other 827 radiation exposures as well as the pros and cons of thyroid evaluation so they can help 828 their patients make good decisions. 8294. Facilitate diagnosis, screening, and if necessary, treatment, for those with cancer and 830 non-cancer radiation-related illnesses. 831A number of organization representatives committed to working on specific campaign goals: 832 ♦ Physicians for Social Responsibility, Alliance for Nuclear Accountability, and the 833 National Indian Council on Aging expressed interest in working on goal #1 and 834 bringing the topic to their organizations’ meetings in May (PSR and ANA), and 835 August (National Indian Council on Aging). 836 ♦ Physicians for Social Responsibility, Alliance for Nuclear Accountability, National 837 Association for the Advancement of Colored People (NAACP), and the National 838 Association of Radiation Survivors offered to work with the federal government on 839 goal #2. 840 49 I-38
    • 841 I.3.1.3 Day Three 842 843Organized Feedback 844In small working groups, participants gave feedback regarding: 845 ♦ Design of an ongoing campaign development workgroup.5 846 ♦ Recommendations for issues to be addressed at the April 2000 ACERER workshop 847 on screening. 848 ♦ Additional audience research needs. 849 ♦ Preparation for audience messaging: What key information needs to be 850 communicated? 851Each small group’s recommendations and comments are presented below. 852 8531. Campaign Development Workgroup 854The workgroup that worked with NCI and CDC to plan the January workshop included 855individuals familiar with the following perspectives, groups, or organizations: 856 ♦ Hanford downwinders 857 ♦ Alliance for Nuclear Accountability 858 ♦ ACERER Subcommittee for Community Affairs 859 ♦ Hanford Health Information Network 860 ♦ NAACP 861 ♦ Physicians for Social Responsibility 862 ♦ A Physician 863 ♦ State Public Health Department (Radiological Health Section) 864 ♦ NCI/CDC/ATSDR staff 5 50 During the Workshop, this group was frequently referred to as the “Campaign Development Group” or 51“CDG.” Since then, NCI staff have elected instead to call the group a “Communications Development Group” 52to be more encompassing of all the efforts involved in communications planning. 53 54 I-39
    • 865Workshop participants in the small group that discussed this topic proposed that the new 866“Campaign Development Group” include the following types of representation (this is a list 867of perspectives to be represented—not specific organizations): 868 ♦ Activists (2) 869 ♦ Downwinders (2) 870 ♦ African American 871 ♦ Health educator 872 ♦ Health professional organization 873 ♦ Hispanic from community and migrant health center 874 ♦ Native American 875 ♦ Physician 876 ♦ State Public Health Department: health education and radiation control (2) 877 ♦ Local health department 878 ♦ Thyroid Foundation 879Criteria for inclusion in workgroup: 880 ♦ Long-term view 881 ♦ A view broader than I-131 and thyroid cancer 882 ♦ Ability and willingness to make necessary time commitment 883 ♦ Ability to do outreach to their communities 884 ♦ Work toward geographic diversity 885It was also agreed that workgroup members need to be reimbursed equitably for the work 886they do on this project, and that the federal agencies involved must commit adequate staffing 887to this effort. 8882. Recommendations for topics to be addressed at the ACERER meeting to address 889screening issues 55 I-40
    • 890 ♦ Feasibility of identifying higher- and lower-risk groups 891 ♦ Basis for decisions regarding policies on screening—scientific analyses alone, versus 892 incorporation of social justice considerations 893 ♦ Risks and benefits of screening for cancer and non-cancer thyroid illness 894 ♦ Incidence of false positives from most recent Hanford Thyroid Disease Study thyroid 895 cancer medical evaluation 896 ♦ Review of science regarding noncancer thyroid outcomes of I-131 exposure 897 ♦ Cumulative effects: how do multiple exposures change a person’s risk classification? 898 ♦ Progress report on research into other radionuclides 899 ♦ Examination of other screening programs around the world 900 ♦ Potential funding mechanisms for screening programs; comparison of other screening 901 programs 902 ♦ Case study of affected citizens 903 ♦ Operating principles 904A workgroup will help plan the ACERER workshop. Individuals working on this list 905offered to participate. They were: John Bagby, Trisha Pritikin, Henry Royal, Robert 906Spengler, Oscar Tarrago, J.B. Hill, David Becker, and Steve Simon. Tim Takaro, Keith 907Baverstock, Owen Hoffman, and Kristin Shrader-Frechette also expressed interest in 908participating in the planning process. 9093. Recommendations for Additional Audience Research 910 Who are we trying to reach? This must be determined before audience research 911 begins. Once this is determined, the research would address: 912 ♦ Demographic research on language, culture, education, and literacy levels. 913 ♦ Preferred sources of information. 914 ♦ Psychographic data -- beliefs/attitudes, epidemiologic data, role of the media. 56 I-41
    • 915 ♦ Message and strategy testing -- look at research and campaigns that have already been 916 done. Do a meta-analysis to transform and digest that data to determine audience 917 needs. 918 ♦ Process evaluation: Was the campaign done on time, within budget? 919 ♦ Outcome evaluation: What were the campaign’s effects? What was the reach, 920 frequency, and duration of communications? How many were exposed over a period 921 of time? What were the effects on knowledge, attitudes, and behaviors? What were 922 the long-term effects on behaviors? 9234. Preparation for Audience Messaging: What key information needs to be 924communicated? 925 ♦ The general United States population should receive information to improve their 926 awareness. 927 o Give historical context, discuss research, production, and testing. Discuss 928 I-131 and other radionuclides. Discuss local testing, global fallout, 929 associated social and ethical issues, and general risk factors (e.g., milk, and 930 gender) so that people can self-identify. Give history of government action 931 and where there is still work to be done. Describe the work that continues on 932 outstanding issues to ensure that exposures from testing won’t happen again. 933 ♦ “Hot spot” audiences should receive: 934 o All the information that the general United States population is receiving (see 935 above). 936 o Information on general risk factors plus multiple exposures so they can self- 937 identify. 938 o Assurance that health care providers and other agencies (e.g., managers at 939 DOE/contractor facilities) are being told about this. 940 ♦ Self-identified as at-risk or other concerned people should receive: 941 o Information that the above audiences receive. 57 I-42
    • 942 o Information on what to do if you don’t have a health care provider. 943 o Details on the ongoing work regarding outstanding issues (screening, 944 compensation, etc.) 945 o A fact sheet from an official organization to bring to a clinic or physician’s 946 office. 947 ♦ Health care providers should receive: 948 o Everything the above two audiences receive and additionally, resources on 949 screening for all thyroid disease. 950 ♦ Payers of Healthcare (HMOs, government programs) and insurance commissioners 951 should receive: 952 o Clinical practice guidelines or Standards of Care. 953 ♦ Workers (research, production, mining, etc.) should receive: 954 o All information that “hot spot” and self-identified at-risk people receive. 955 ♦ State Health Departments should receive: 956 o All information that health care providers receive so they know they will also 957 be disseminators, and must be kept informed as campaign progresses. 958 ♦ State Regulators should receive: 959 o All the same information that health care providers and state health 960 departments receive. 961 We still need to determine the right organizations to communicate messages to 962 various target audiences. 963Summary Comments 964Anne Lubenow, Acting Co-chief of the Health Promotion Branch in the Office of Cancer 965Communications, NCI, thanked all of the participants and expressed NCI’s appreciation for 966everyone sharing their views. She encouraged participants to contact the NCI staff as 967needed. She also stressed that although we don’t yet have all of the answers, we are on the 58 I-43
    • 968road to developing a campaign, and have identified some common ground, as well as areas 969that need further discussion. 970Joan Morrissey, Health Communicator with the Radiation Studies Branch, CDC, followed 971by thanking the workgroup for the tremendous amount of work they put in to planning this 972successful workshop. She specifically noted her desire to put together a Native American 973caucus, as suggested by Robert Holden. She reiterated the agencies’ commitment to 974developing and implementing this program and doing it right. 975A sampling of participants’ closing remarks 976“It’s been really heartening for me as a person from a significantly impacted community to 977feel that all these people actually care about people like me, finally, because there are a 978whole lot of times when I don’t feel that way. And I want to thank the agencies involved for 979never telling us that we couldn’t discuss something. We were able to put all the issues on 980the table and discuss everything that I think people wanted to talk about. I feel very good 981about this process.” 982“I see an incredible variety of talent, knowledge, and goodwill in this room, and I see a huge 983opportunity to make a truly positive impact on all of society.” 984“A grave concern in all of this is that these issues have the ability to divide people in this 985country rather than unite them. If the same spirit of bringing different people together here 986could be the spirit of whatever moves out of it, I think we can go very far.” 987Next Steps 988Nelvis Castro, Acting Associate Director for Cancer Communications at the NCI, thanked 989the participants for their candor and their dedication to this effort. She stated that the 990summary of the meeting would be posted on the listserv for a 2-week comment period, then 991finalized and distributed to interested parties. Dr. William Raub has committed to bringing 992the report to Secretary Shalala’s attention. A Campaign Development Group will be formed 993and will review the draft communications plan and help with future activities. She estimated 994that the plan will take about six months to draft. The plan will be refined and modified as 995necessary based on feedback received from this group. She also hopes to learn about the 59 I-44
    • 996communications channels that participants use to reach their constituents to expand the 997reach of the messages that are developed for this campaign. 998Owen Devine, Ph.D., chief of the Risk Assessment and Communication Section, Radiation 999Studies Branch, CDC, talked about future plans to study other radionuclides and global 1000fallout. A feasibility assessment will be presented to ACERER in June 2000 and to 1001Congress in July 2000. It will be an assessment of the scientific feasibility of estimating 1002dose and risk to the United States population from global fallout, including NTS. There will 1003be a large discussion of communications in the report as well. He thanked all of the 1004participants. 1005Dr. Alan Rabson closed the meeting by repeating the apology for NCI’s delay in finishing 1006the Nevada Test Site Fallout report. Processes have been put in place at the Institute so that 1007such an “unconscionable delay” will never happen again. He called the workshop an 1008“historic meeting” that has given NCI a new understanding and commitment to working 1009with community representatives. He assured participants that NCI intends to follow 1010through. 60 I-45
    • 1011 1012 I.3.2 List of Working Group Members and 1013 Government Staff 1014 1015 I.3.2.1 Community Representatives 1016 1017H. Jack Geiger, M.D. - (Departed group 11/99) 1018James B. Hill, Jr. - President, NAACP, Oak Ridge Branch 1019Yvette Joseph-Fox - National Indian Health Board (Departed group 10/99) 1020Bea Kelleigh - Executive Director, Hanford Health Information Network Resource Center 1021Stan Marshall - Radiological Health Section, Nevada State Health Division 1022Robert Musil - Executive Director, Physicians for Social Responsibility 1023Trisha Pritikin, Esq., M.Ed., O.T.R. - Downwinder 1024Robert Tiller - Physicians for Social Responsibility (Departed group12/99) 1025Seth Tuler, Ph.D. - Childhood Cancer Research Institute and Clark University 1026 1027 I.3.2.2 Government Staff 1028 1029National Cancer Institute 1030 1031Nelvis Castro - Acting Associate Director for Cancer Communications 1032Betsy Duane - Communications Coordinator, Division of Cancer Epidemiology and 1033 Genetics 1034Mark Epstein - Porter Novelli (Consultant) 1035Anne Lubenow - Acting Chief, Health Promotion Branch 1036Kelli Marciel - Presidential Management Intern, Health Promotion Branch 1037Jim Mathews - Senior Science Writer, Health Promotion Branch 1038Alan Rabson, M.D. - Deputy Director, National Cancer Institute 61 I-46
    • 1039Paul Van Nevel - Van Nevel Communications, (Consultant - then Associate Director for 1040 Cancer Communications - retired as of 12/31/99) 1041Cori Vanchieri - Vanchieri Communications (Consultant) 1042 1043Centers for Disease Control, National Center for Environmental Health 1044 1045Owen Devine, Ph.D. - Chief, Risk Assessment and Communication Section, Radiation 1046 Studies Branch (moved to another division 2/1/00) 1047Christie Eheman - Epidemiologist 1048Joan Morrissey - Health Communicator, Radiation Studies Branch 1049Judith Qualters, Ph.D. - Acting Chief, Risk Analysis and Communication Section, Radiation 1050 Studies Branch 1051 1052Agency for Toxic Substances and Disease Registry 1053 1054Oscar Tarrago, M.D., M.P.H. - Fellow, Office of the Director, Division of Health Education 1055 and Promotion 1056 1057 I.3.3 Workshop Participants 1058 1059(In alphabetical order by last name) 1060 1061Elaine Bratic Arkin, Health Communication Consultant 1062John Bagby, Ph.D., Chairman, Advisory Committee for Energy Related Epidemiologic 1063 Research 1064Wayne Ball, Ph.D., Toxicologist, Utah Department of Health, Bureau of Epidemiology 1065Keith Frederick Baverstock, Ph.D., Regional Advisor, Public Health and Environmental 1066 Radiation, World Health Organization 1067David V. Becker, M.A., M.D., Professor of Radiology, Professor of Medicine, New York 1068 Presbyterian Hospital, Weill Medical College of Cornell University 1069Marco Beltran, M.P.H., Program Specialist, Migrant Head Start Quality Improvement 1070 Center 62 I-47
    • 1071Joni Berardino, M.S., National Center for Farmworker Health 1072Luis Buen Abad, M.Ed., Environmental Specialist, Hanford Health Information Network 1073John Burklow, Deputy Director for Communications, Office of Communications and Public 1074 Liaison, NIH 1075Leticia Camacho, J.D., M.A., Director of Policy and Advocacy, Migrant Clinicians Network 1076Nelvis Castro, Acting Associate Director, Office of Cancer Communications, National 1077 Cancer Institute 1078David Cooper, M.D., Director, Division of Endocrinology, Sinai Hospital of Baltimore 1079Sharon Cowdrey, R.N., President, Miamisburg Environmental Safety and Health 1080Owen Devine, Ph.D., Chief, Risk Assessment and Communication Section, Radiation 1081 Studies Branch, CDC 1082Betsy Duane, Communications Coordinator, Division of Cancer Epidemiology and 1083 Genetics, National Cancer Institute 1084Christie Eheman, Ph.D., Epidemiologist, Centers for Disease Control and Prevention 1085Maureen Eldredge, Program Director, Alliance for Nuclear Accountability 1086Mark Epstein, Communications Consultant, Porter Novelli 1087Valerie Fiset, R.N., M.Sc.N., Clinical Nurse Specialist, Palliative Care, Sisters of Charity of 1088 Ottawa Health Service 1089James Flynn, Ph.D., Senior Research Associate, Decision Research 1090Patricia George, Community Research Coordinator, Nuclear Risk Management for Native 1091 Communities Project 1092Thomas M. Gerusky, Certified Public Health Physicist, Retired Director, Pennsylvania 1093 Bureau of Radiation Protection, Conference of Radiation Control Program Directors 1094Hossein Gharib, M.D., Professor of Medicine, Mayo Medical School, Mayo Clinic 1095F. Lincoln Grahlfs, Ph.D., M.A., President, National Association of Radiation Survivors 1096Michael Hansen, representing Jean Halloran, Director, Consumer Policy Institute, 1097 Consumers Union 1098James B. Hill, Jr., President, NAACP Oak Ridge Branch 1099Felicia Hodge, Dr.P.H., Director, Center for American Indian Research and Education 63 I-48
    • 1100F. Owen Hoffman, Ph.D., President, SENES Oak Ridge, Inc. 1101Robert Holden, Director, Nuclear Waste Program, National Congress of American Indians 1102Bea Kelleigh, M.P.A., Executive Director, Hanford Health Information Network Resource 1103 Center 1104Gary Kodaseet, Vice Chairman, National Indian Council on Aging 1105Susan Koppi, Director, Public Affairs, The Endocrine Society 1106Gary L. Kreps, Ph.D., Chief, Health Communication and Informatics Research Branch, 1107 National Cancer Institute 1108Charles Land, Ph.D., Division of Cancer Epidemiology and Genetics, National Cancer 1109 Institute 1110Robert Lawrence, M.D., Associate Dean for Professional Education and Programs, School 1111 of Hygiene and Public Health, Johns Hopkins University 1112Lisa Ledwidge, M.P.A., M.S.E.S., Outreach Coordinator and Editor, SDA, Institute for 1113 Energy and Environmental Research 1114Delvin Littell, M.D., Medical Director, Morgan County Medical Center 1115Paul A. Locke, M.P.H., Dr.P.H., Deputy Director, Pew Environmental Health Commission 1116Anne Lubenow, M.P.H., Acting Chief, Health Promotion Branch, National Cancer Institute 1117Roger Macklin, M.S., Health Physicist, Tennessee Department of Environment and 1118 Conservation, Director of Radiological Health 1119Kelli Marciel, M.P.A., Presidential Management Intern, Health Promotion Branch, National 1120 Cancer Institute 1121Stan Marshall, Radiological Health Section, Nevada State Health Division 1122James Mathews, Senior Science Writer, Office of Cancer Communications, National Cancer 1123 Institute 1124Normie C. Morin, Ph.D., M.P.H., Project Director, Rocky Flats Health Studies, Disease 1125 Control and Environmental Epidemiology Division 1126Joan Morrissey, Health Communicator, Radiation Studies Branch, Centers for Disease 1127 Control and Prevention 1128Robert Musil, Executive Director, Physicians for Social Responsibility 1129Dennis Nelson, Ph.D., Director of Research, Support and Education for Radiation Victims 64 I-49
    • 1130Nancy Nelson, Mass Media Branch, Office of Cancer Communications, National Cancer 1131 Institute 1132Claudia Parvanta, Ph.D., Director, Division of Health Communication, Office of Cancer 1133 Communications, Centers for Disease Control and Prevention 1134Judy Patt, Cancer Information Service, National Cancer Institute 1135Devon Payne-Sturges, M.P.H., Assistant Commissioner for Environmental Health, 1136 Baltimore City Health Department 1137Stacye Poer, Program Analyst, Office of Legislation and Congressional Activities, National 1138 Cancer Institute 1139Trisha T. Pritikin, Esq., M.Ed., O.T.R., Downwinder/Community Representative 1140Idaho J. Purce, Project Director, HIV/AIDS Education, NAACP; INEEL Health Effects 1141Judith R. Qualters, Ph.D., Acting Chief, Risk Analysis and Communication Section, NCEH, 1142 Centers for Disease Control and Prevention 1143Alan S. Rabson, M.D., Deputy Director, National Cancer Institute 1144William Raub, Deputy Assistant Secretary for Science Policy, Department of Health and 1145 Human Services 1146Karim Rimawi, Ph.D., Director, Bureau of Environmental Radiation Protection, New York 1147 State Department of Health 1148Jacob Robbins, M.D., Scientist Emeritus, National Institute of Diabetes and Digestive and 1149 Kidney Diseases 1150Henry D. Royal, M.D., Professor of Radiology, Division of Nuclear Medicine, Mallinckrodt 1151 Institute of Radiology, Washington University School of Medicine 1152Michael Sage, Acting Deputy Director, National Center for Environmental Health, Centers 1153 for Disease Control and Prevention 1154Peter Sandman, Ph.D., Risk Communication Consultant 1155Elke Shaw-Tulloch, Manager, Environmental Health Education Program, Idaho Division of 1156 Health 1157Kristin Shrader-Frechette, Ph.D., Medical Ethicist, Department of Philosophy and 1158 Department of Biological Sciences 1159Steven L. Simon, Ph.D., Senior Staff Officer, National Academy of Sciences, Board on 1160 Radiation Effects Research 65 I-50
    • 1161Robert F. Spengler, Sc.D., Associate Administrator for Science, Agency for Toxic 1162 Substances and Disease Registry 1163Patrice Sutton, M.P.H., Western States Legal Foundation 1164Diana Swindel, Associate Director, Communications Office, National Center for 1165 Environmental Health 1166Tim K. Takaro, M.D., M.P.H., M.S., Acting Assistant Professor, University of Washington 1167 School of Medicine 1168Oscar Tarragó, M.D., M.P.H., Fellow, Office of the Director, Agency for Toxic Substances 1169 and Disease Registry, Division of Health Education and Promotion 1170Kevin Teale, M.A., Communications Director, Iowa Department of Public Health 1171Stephen Thomas, Ph.D., Associate Professor, Director, Institute of Minority Health 1172 Research, Rollins School of Public Health, Emory University 1173Tim L. Tinker, Dr.P.H., M.P.H., Chief, Communications and Research, Agency for Toxic 1174 Substances and Disease Registry 1175Seth Tuler, Ph.D., Childhood Cancer Research Institute and Clark University 1176R. Michael Tuttle, M.D., Assistant Attending, Memorial Sloan-Kettering Cancer Center 1177J. Paul Van Nevel, Van Nevel Communications, Consultant to the National Cancer Institute 1178Cori Vanchieri, Vanchieri Communications, Consultant to the National Cancer Institute 1179Neil Weinstein, Ph.D., Professor, Department of Human Ecology, Rutgers University 66 I-51
    • 1180 1181 I.3.4 Proposed Campaign Operating Principles 1182 1183 ♦ Honesty, openness to differing points of view, and a willingness to answer questions 1184 will characterize the ongoing planning, operation, and evaluation of the campaign. 1185 ♦ Trust and credibility will be earned and maintained by providing accurate and 1186 comprehensive information. 1187 ♦ The campaign will be respectful of human rights and the dignity of affected people. 1188 ♦ Persons who may have been exposed to radiation released from the Nevada Test Site 1189 will be involved in the development, implementation, and guidance of the campaign. 1190 ♦ Campaign information will be accurate, scientifically sound, and will explain the 1191 uncertainties of current knowledge. 1192 ♦ Information will be supportive, reflecting compassion and an understanding of 1193 scientific, medical, psychological, and ethical issues involved. 1194 ♦ The campaign will consider the needs of underserved populations and will strive for 1195 social equity. 1196 ♦ Efforts will be outcome-oriented. 1197 1198 I.3.5 List of Other Resources 1199 1200 ♦ The NCI Fallout Report and all Campaign materials, including an individual dose/risk 1201 calculator can be found online at www.cancer.gov/I-131. 1202 ♦ The IOM’s review of the NCI report can be viewed online as well. Visit 1203 www.nap.edu and enter ‘Exposure of the American*’ in the “search all titles” field. 1204 ♦ The National Research Council report referenced by Kristin Shrader-Frechette in her 1205 remarks, Understanding Risk: Informing Decisions in a Democratic Society, is also 1206 available at www.nap.edu using the title search feature. 67 I-52
    • 1207 ♦ The Agency for Toxic Substances and Disease Registry Continuing Education Course 1208 for health care professionals, Case Studies in Environmental Medicine: 1209 Radiation Exposure from Iodine-131, is available on the ATSDR website. 1210Other valuable websites: 1211 ♦ CDC’s National Center for Environmental Health, Radiation Studies Branch 1212 homepage (includes links to Hanford Thyroid Disease Study): 1213 www.cdc.gov/nceh/programs/radiation 1214 ♦ Hanford Community Health Project, an outreach and education initiative sponsored 1215 by ATSDR, provides educational information and materials about potential health 1216 risks to individuals who were exposed as young children to past releases of 1217 radioactive iodine (I-131) between 1944 and 1951 from the Hanford Nuclear 1218 reservation, in Washington State: http://www.atsdr.cdc.gov/hanford/ 1219 The NCI publication Making Health Communication Programs Work: A 1220 Planner's Guide, a resource for health communicators, first published in 1989 1221 and widely known as the "Pink Book." The 2002 updated version reflects 1222 recent advances in knowledge and technology, such as the Internet, that can 1223 affect the communications process. This handbook presents key principles and 1224 steps in developing and evaluating health communications program for the 1225 public, patients, and health professionals. It can be viewed online at 1226 www.cancer.gov/pinkbook. Print or CD-ROM copies can be ordered by calling 1227 1-800-4-CANCER (1-800-422-6237) or online at 1228 http://cancer.gov/publications. 68 I-53
    • 1229 I.4 Report of Key Findings: In-depth Interviews 1230 with Experts About I-131 Exposure from the 1231 Nevada Test Site 1232 1233 1234 1235 1236 1237 1238 1239 1240 1241 1242 1243 1244 Prepared by: 1245 1246 Office of Cancer Communications 1247 National Cancer Institute 1248 31 Center Drive MSC-2580 1249 Building 31, Room 10A03 1250 Bethesda, MD 20892-2580 1251 1252 1253 January 2000 69 I-54
    • 1254I. INTRODUCTION AND METHOD 1255 1256The National Cancer Institute (NCI) and Centers for Disease Control and Prevention (CDC) 1257are designing a national campaign to implement Institute of Medicine (IOM) 1258recommendations to communicate to Americans the potential health effects of Iodine-131 1259(I-131) radiation released during atmospheric testing in Nevada during the 1950s and 1960s. 1260To inform this effort, NCI conducted 19 in-depth interviews with individuals who have 1261expertise in areas related to the issue of nuclear fallout. The main objectives of this research 1262were to measure awareness level, concern, familiarity with, and evaluation of the NCI 1263Report and IOM recommendations about I-131 from the Nevada Test Site, and to obtain 1264recommendations about how to conduct a communication campaign. 1265 1266A working group consisting of NCI staff, CDC staff, and a panel of community 1267representatives generated a list of potential interviewees. Individuals were suggested in a 1268number of categories, including state and local public health officials, community advocates 1269(including environmental, health, and pro-nuclear groups), scientific experts (e.g., radiation 1270scientists), health-oriented professional organizations, veterans, health care providers (e.g., 1271thyroid specialists), and health educators. 1272 1273The selection of interviewees was based on the following criteria: 1) level of expertise; 2) 1274an effort to obtain representation from all the categories listed above; and 3) geographic 1275diversity. The original interviewee list was comprised of 29 contact names collectively 1276agreed upon by working group members. Interviews were completed with 19 interviewees. 1277When an effort to contact a particular interviewee was not successful, an alternate name was 1278generally provided by working group members. Alternates were selected from the same 1279type of background as the originally proposed interviewee. 1280 1281In order to report the interview results in a way that incorporates the contextual background 1282of individuals, interviewees were separated into three major reporting categories: 1283 1284 Public Health Officials: Six government officials were interviewed in this category. 1285 Participants included those employed in public health departments in states with 1286 varying degrees of I-131 exposure from the Nevada Test Site and other representatives 1287 involved in radiation issues at the state level. 1288 1289 Advocacy Groups: Seven individuals were interviewed in this category. Participants 1290 held a variety of positions in organizations dedicated to different issues associated with 1291 nuclear or radiation issues. Organizations were selected to represent a broad range of 1292 opinion. Included in this category were representatives of groups dedicated to 1293 radiation-exposed populations, the environment, and the advancement of nuclear 1294 science. 1295 1296 Scientific Experts: Six individuals were interviewed in this category. Participants 1297 included both radiation and thyroid experts associated with a variety of institutions. 1298 70 I-55
    • 1299Interview questions were designed to measure awareness, concern and opinions about what 1300constitutes an appropriate outreach response (See Attachment H-4-A for a copy of the 1301interview instrument). It should be noted that the interview guide was not followed 1302verbatim, and language was altered in some cases to be sensitive to the background and 1303expertise level of each respondent. Each interview lasted approximately 30 minutes. 1304 1305It should also be noted that in-depth interviewing is a qualitative research technique. 1306Although the findings from this research can provide useful detailed insights into the 1307perceptions and views of different organizations and experts involved with the I-131 fallout 1308issue, they cannot represent the views of all such groups or persons. 1309 1310II. KEY FINDINGS 1311 1312This section outlines the key/preliminary findings from the interviews. Differences in 1313responses between reporting groups are outlined separately. 1314 1315A. Awareness and Concern 1316 1317• For public health officials, the NCI report frames the boundaries of awareness. 1318 1319When asked what they knew about the potential health effects of the Nevada Test Site, the 1320majority of public health officials cited the NCI study as their primary reference point. All 1321agreed that thyroid cancer or “the thyroid problem” was the main potential health outcome 1322to be concerned about. Although two officials mentioned other possible conditions, like 1323autoimmune illnesses and damage to other organs, they qualified these statements indicating 1324that the data and science were only available on the thyroid cancer link. Only one official 1325could name other radioactive substances released from the site in addition to I-131. 1326 1327On a scale of one to ten, with one indicating “not at all severe” and ten indicating “very 1328severe,” most officials gave the potential health effects from the Nevada Test Site a fairly 1329low severity rating of two or three. Only one official gave it a relatively high rating of six. 1330 1331None of the officials said their organization had a formal position on I-131 exposure from 1332the Nevada Test Site. One official, in a state with some highly exposed counties, said they 1333were “struggling” to determine whether or not the potential risks justify a public outreach 1334effort. 1335 1336• Advocacy groups have a far broader scope of concern. 1337 1338Fewer advocacy group participants mentioned the NCI report when asked about their 1339knowledge of the potential health effects of the Nevada Test Site. Although most mentioned 1340thyroid cancer and other non-cancerous thyroid abnormalities as possible outcomes, a few 1341participants also mentioned leukemia. One representative said genetic mutations and birth 1342defects were also a possibility. 1343 71 I-56
    • 1344In addition to being concerned about more health effects, advocacy group representatives 1345were also more aware of other radioactive materials emitted from the tests. The most 1346frequently cited substances after I-131 were cesium, strontium, and plutonium. When asked 1347which substances they worried about the most, advocates said that all the substances posed 1348significant reasons for concern, but for different reasons. Some pointed out the varying half- 1349lives of the substances; several, for example, talked about plutonium’s ability to persist in 1350the environment for long periods of time. One representative took the opportunity to say 1351that the NCI report was “too narrowly and conveniently” focused on thyroid cancer instead 1352of on other more lethal cancers like leukemia, breast and bone cancer that may be caused by 1353other materials like strontium and cesium. 1354 1355Advocates rated the severity of the health effects from the Nevada Test Site much higher 1356than did the public health officials. Most gave a rating somewhere in the range of eight to 1357ten. Only one respondent thought differently. This participant, who refused to use the 1358rating scale, characterized the potential health effects from Nevada Test Site exposure as 1359100 times more severe than an accident like Three Mile Island or waste disposal sites, but 1360much less severe than radiation received from medical diagnostic tests. 1361 1362All but two representatives said their organization had a position on exposure from the 1363Nevada Test Site. One representative said there needed to be more education and research 1364on the association between exposure and non-thyroid disorders, particularly parathyroid 1365disorders. Another said the government needed to be more “forthright” and “conscientious” 1366in its efforts to inform the public. Others called for health care provider education efforts 1367and clinical screening and monitoring. Although two representatives said their organization 1368did not have a formal or official position, they did say their organization generally supports 1369the cause of research and educational efforts conducted for the benefit of exposed 1370populations. 1371 1372• Concerns of scientific experts are defined by their evaluation of “the evidence.” 1373 1374Scientific experts chose to focus primarily on the thyroid-cancer link when asked what they 1375knew about the health consequences of the Nevada Test Site. Most made evaluative 1376comments about the findings. The level of detail provided about the relationship between 1377I-131 and thyroid cancer varied by the type of expert. Radiation experts provided much 1378more detailed information and critiques of the NCI data. One such expert said, “I am aware 1379that 10,000 to 75,000 new thyroid cancers will result from these tests.” Another radiation 1380expert characterized the findings as “statistically suggestive rather than significant.” 1381Strontium, cesium, and plutonium were most frequently mentioned by radiation experts as 1382some of the other key radionuclides that were emitted from the tests. One expert said I-131 1383should be paid the most attention because it was the “main fallout product.” 1384 1385Thyroid experts had less detailed knowledge and seemed to retain only the facts they felt 1386were relevant to their concerns and practice areas. These specialists were primarily 1387concerned about the relationship between I-131 and thyroid disorders and less interested in 1388other health effects. They were aware of the Nevada Test Site solely because of its 1389relationship to I-131 (an issue thyroid specialists are quite knowledgeable about), since the 72 I-57
    • 1390site presents another potential avenue of iodine exposure. These specialists expressed 1391limited concern, stating that exposure was found to be minimal for the most part and that 1392thyroid cancer is highly treatable. 1393 1394Expert ratings of the severity of potential health effects were more mixed than the other two 1395interviewee groups. One radiation expert rated the severity of the health effects as a one or a 1396two, while another rated it as an eight or nine. Many had difficulty providing unqualified 1397responses, probably due to their high knowledge levels. For example, one radiation expert 1398said the severity rating is dependent on geography, giving a one for a person living in New 1399York City and a four for a person living in Utah. Thyroid specialists shared more 1400commonality in their ratings with most giving it a low rating of a one or two. One specialist 1401said the rating is dependent on age of exposure, giving it a rating of five for a child and only 1402a rating of one for an adult. 1403 1404B. Familiarity and Evaluation of NCI Report and IOM Action Recommendations 1405 1406• Public health officials are in agreement with findings and recommendations. 1407 1408All public health officials were quite familiar with the reports, and most had a good working 1409knowledge of risk factors and other specifics. Officials in states with heavily exposed 1410populations were more informed than officials from states with less exposure. One official 1411of a state with areas of high exposure reported using the NCI data to conduct their own state- 1412level investigation. Two officials in less exposed states had a more general level of 1413knowledge about the NCI findings. 1414 1415Overall, public health officials found the reports useful. Two officials said the most useful 1416information was the county-level exposure information. Two others said the reports serve as 1417good background pieces about the relationship between I-131 and thyroid cancer and will be 1418a useful framework for thinking about other exposure sites throughout the country. There 1419were few suggestions for additional information. One official said more definitive 1420information on the risk associated with I-131 exposure was needed to determine what the 1421exposures really mean from a health perspective. Another official thought information on 1422the relationship between I-131 exposure and non-cancerous thyroid disorders would be 1423important to have since there was a lot of “talk” about this issue. 1424 1425All officials agreed with the IOM position that screening would cause more harm than good, 1426due to the number of false positives. One individual said screening was also not advisable 1427because the exposure findings were uncertain, and individuals would be better served if their 1428own doctor decided whether or not screening was appropriate for them. 1429 1430Most public health officials thought the proposed strategy of educating the general public 1431and providing physicians with information to respond to inquiries would be very effective. 1432Some said this was important because health care providers lack knowledge about the 1433association between iodine and thyroid disease. One individual said it would be effective 1434because people listen to and trust their doctors. Another official thought that the strategy 73 I-58
    • 1435made sense but that the nature of the information would be difficult for the public to 1436understand. 1437 1438• Advocacy groups disagree more with findings and recommendations. 1439 1440Approximately two-thirds of the advocates said they were very familiar with the NCI and 1441IOM reports. The remaining one-third recalled major pieces of information but without 1442specifics. Advocacy group opinion about the information in the reports was considerably 1443more divided than among public health officials. One representative said that some of the 1444exposure information was inaccurate and that there were more areas listed as low-exposure 1445areas than should be. Another representative held the opposite view, saying that there were 1446more high-exposure areas than should be. A couple of representatives said the reports were 1447useful in the sense that there was an “admittance” of responsibility, and some information 1448was at least “out there.” And another representative took credit for pushing Congress to get 1449the report “done in the first place.” 1450 1451Advocacy representatives were far less supportive of the IOM screening recommendations 1452than public health officials. Half thought screening for thyroid cancer was necessary, and 1453half agreed that it was not a beneficial course of action. One individual supported the notion 1454that screening for thyroid cancer would result in too many false positives, but felt screening 1455for other disorders like hypothyroidism and hyperparathyroidism should be conducted. 1456 1457When asked how effective the IOM strategy of educating physicians and the public would 1458be, most advocates characterized the strategy as one that would be “helpful.” Two 1459participants focused on the need to educate physicians so patients will be “taken seriously” 1460and will not have to “educate their physicians.” Only one participant felt the action would 1461be unnecessary and expressed doubt about the ability to educate physicians who are 1462“essentially lay people when it comes to nuclear and radiation issues and lack technical 1463knowledge and background.” 1464 1465• Thyroid experts are in agreement, while radiation experts are more divided. 1466 1467While the radiation experts were very familiar with the NCI and IOM reports and had 1468examined them in detail, the thyroid specialists were only vaguely familiar with the actual 1469reports. Despite their uncertainty about having read the reports, however, the thyroid 1470specialists felt certain that they understood the overall findings from other sources like 1471professional journals, newspapers, and presentations. In general, they recalled that the 1472exposure did not pose a very significant health threat. 1473 1474Those radiation experts who had read the reports found some information useful and some 1475not. While one expert said the reports were “most inclusive and helpful,” another said they 1476were “inconclusive” because the findings were “extrapolated from only 100 sites.” Another 1477expert felt the information was useful, but needed to be translated in a way that would make 1478it possible for the lay public to understand. The lack of “risk information” was “curiously 1479avoided,” according to another expert. 1480 74 I-59
    • 1481The radiation experts were also divided on the issue of screening. One agreed with the 1482argument that “screening will do more harm than good.” Another agreed that it made no 1483sense to screen the general population, but did think the issue of screening high-risk 1484populations needed to be addressed. Another expressed agreement with not screening for 1485thyroid cancer, but thought looking into screening for other non-cancerous thyroid disease 1486was essential. The thyroid specialists were less divided, all indicating that wide-scale 1487screening for thyroid cancer would result in too many false positives and could result in 1488harm to the patient in terms of unnecessary surgical procedures. 1489 1490Most experts thought the action recommended by the IOM would be very effective. Their 1491reasons for thinking this strategy would be effective were similar to those of the other 1492groups. Explanations provided were that physicians lack knowledge and have direct patient 1493contact, while patients for the most part feel comfortable with their doctors. One expert said 1494the strategy would be only “moderately effective” because physicians may not take the time 1495to review the information provided and because not everyone has health insurance and/or is 1496under the care of a physician. 1497 1498C. Educational Efforts: What’s Needed? 1499 1500• Public health officials think risk factors should determine the focus and scope of the 1501 campaign. 1502 1503When asked if the entire U.S. needs to be the target of an educational effort or if the effort 1504should be confined only to those most heavily exposed, officials answered in accordance 1505with their understanding of the risk factors and exposure patterns. One official thought the 1506campaign could be focused on those who were children at the time and drank milk from a 1507backyard goat or cow since these individuals were most at risk. Another official thought 1508everyone should be given information, but the campaign should be more aggressively 1509focused on those at higher risk. Those who thought a campaign would need to target the 1510whole population grounded their opinions on the premise that it would be difficult to “find” 1511everyone at high risk due to factors like mobility and storm and wind patterns. 1512 1513By far, the most important information that officials thought needed to be provided to people 1514is a profile of the risk factors. One official thought such a profile, along with an 800 number 1515for those who need more information, would be a good idea since it is so difficult to separate 1516out those who need to be concerned from those who don’t. 1517 1518• Advocacy groups say a “right to know” argument prevails. 1519 1520A majority of advocates said a national campaign was needed because citizens have “a right 1521to know” about the actions of their government. For example, one advocate said, “Everyone 1522should know that this was done without our knowledge” because “the government has no 1523right to contaminate us.” Another said information should not be “denied to people,” but 1524qualified the response by saying it would be difficult to really get the information to 1525everyone because a “large portion of the public is apathetic,” especially when something 1526seems so “far away.” Some thought a general public information campaign was needed 75 I-60
    • 1527along with a more targeted and aggressive effort to ensure that high-risk groups are reached. 1528Only one advocacy group representative thought that little needed to be done; this individual 1529expressed the view that something “had to be done” because the issue had become “so 1530political,” but thought that the campaign should be very targeted to those at highest risk. 1531 1532In addition to providing information on risk factors, advocates often mentioned a need to 1533translate the information into a format that people can understand. One said people need to 1534be provided with a listing of symptoms that may signal a thyroid problem so they can ask 1535their doctor for a blood test or ultrasound. Another said people needed all the information 1536required to calculate their own dose. 1537 1538• Scientific experts propose solutions mixed with some worry about invoking 1539 “unnecessary” fear. 1540 1541Although solutions proposed by scientific experts varied, more participants in this group 1542than others expressed concern about the need to present information in a way that does not 1543provoke anxiety or panic on the part of the public. The thyroid specialists frequently made 1544this argument and expressed a preference for a targeted “talk to your doctor” type approach, 1545especially aimed at those who were children at the time of exposure. One specialist thought 1546it would be important to assure people that the NCI study was a “very carefully run study so 1547they should not be afraid.” 1548 1549Radiation experts were more divided. One expert thought the “right to know” demanded a 1550national campaign. This individual characterized the notion of a targeted campaign as a 1551scientific impossibility because it would be too difficult to “find” the people most heavily 1552affected. Another felt the information was already “out there” for people who needed to 1553find it. He said that “the advocates do a good job of letting people know who need to know” 1554and any further effort will start a public panic.” 1555 1556D. Participant Recommendations for How to Conduct a Campaign 1557 1558• The majority of participants are in consensus about campaign “how-to’s.” 1559 1560Although there was much disagreement about the appropriate scope and focus of a potential 1561educational information campaign, a high degree of consensus emerged on how a campaign 1562would be best implemented. 1563 1564 o Most participants said that such a campaign would need to be conducted at a 1565 national level with significant use of mass media. Even many of those who 1566 thought more targeted campaigns were appropriate “back-tracked” a little here, 1567 realizing that a national effort may be needed in order to “find” everyone. 1568 1569 o Providing information about exposure and risk was seen as important; dose 1570 information, as less so. A substantial amount of concern was expressed about the 1571 use of risk comparisons because they may tend to trivialize the issue. 1572 76 I-61
    • 1573 o By far, participants across all three groups thought a coalition of different types 1574 of organizations (government, advocacy groups, and non-profits) should 1575 implement the campaign. 1576 1577 o The belief that a coalition was needed to counteract a lack of public trust in 1578 government and lend credibility to the campaign was expressed far more often by 1579 advocates than by public health officials and scientific experts. 1580 1581 o State public health officials thought their departments could play valuable 1582 coordinating roles at the state and local levels. 1583 1584 o In terms of federal government participation, there was little preference for 1585 which agency(ies) should lead the effort. It became apparent throughout many of 1586 the interviews, particularly with advocates, that individuals do not make 1587 distinctions between various federal agencies -- for example, CDC, NCI, the 1588 Department of Energy (DOE), or the Environmental Protection Agency (EPA). 1589 Many think of the “government” as an all-encompassing entity. When 1590 participants did make agency recommendations, NCI and CDC were the most 1591 frequently mentioned. 1592 1593 o Participants thought a variety of materials and resources would be helpful to their 1594 organizations: fact sheets, information kits, videos, in-person meetings, 1595 conferences and web-based materials. Web-based information was very 1596 appealing; videos and in-person meetings, somewhat less so. 1597 77 I-62
    • 1598Attachment I-4-A OMB #0925-0046 1599 Exp. Date: 8/31/00 1600 1601 1602 1603INTERVIEW GUIDE FOR IN-DEPTH INTERVIEWS 1604ABOUT I-131 EXPOSURE FROM THE NEVADA TEST SITE 1605 1606November 1999 1607 1608I. INTRODUCTION (3 MINUTES) 1609 1610Hello, my name is __________ from Porter Novelli, and I’m calling on behalf of the 1611National Cancer Institute and the Centers for Disease Control and Prevention. These 1612organizations are currently working to develop educational efforts to address health effects 1613that may be related to nuclear fallout from an atomic weapons testing program conducted in 1614Nevada in the 1950s and 1960s. Do you have approximately 30 minutes so that I can talk 1615with you about health issues related to the Nevada nuclear tests? 1616 1617[IF YES, CONTINUE. OTHERWISE, TRY TO RESCHEDULE FOR ANOTHER DAY 1618AND TIME.] 1619 1620If it is alright with you, I would like to audio-record this discussion because everything you 1621say is important. All of your comments will be kept confidential, and your responses will 1622never be connected to your name or organization. 1623 1624 1625IA. ORGANIZATIONAL DEMOGRAPHICS (4 MINUTES) 1626 1627First of all, I’d like to understand more about your organization. 1628 16291. What is your organization’s mission and goals? 1630 16312. Who or what does your organization represent? 1632 16333. Does your organization have membership? Approximately how many members do 1634 you have? 1635 16364. Does your organization have any other core audiences or stakeholders? 1637 16385. How do you typically communicate with your audiences? 1639 78 I-63
    • 1640 1641II. AWARENESS AND CONCERN (5-10 MINUTES) 1642 16431. What nuclear or radiation issues are you involved with or concerned about? 1644 1645 PROBE for both locations (e.g., Hanford, etc.) as well as different types of radiation. 1646 16472. I’d like to talk specifically about the Nevada nuclear bomb tests now. What 1648 knowledge do you have about the Nevada tests and their consequences? What about 1649 health effects specifically? 1650 1651 PROBE: Potential cancer-related health effects? 1652 Non-cancer-related effects? 1653 16543. Overall, on a scale of 1 to 10 (with 1 meaning not severe at all and 10 meaning very 1655 severe), how severe do you think the possible health effects of the Nevada nuclear 1656 bomb tests are? (INTERVIEWER NOTE: Collect professional/organizational 1657 perspective rather than personal.) 1658 16594. How would you rate the severity of these effects in relation to other nuclear or 1660 radiation issues that you are concerned about on a scale of 1 to 10? (INTERVIEWER 1661 NOTE: Collect professional/organizational perspective rather than personal.) 1662 16635. About 100 nuclear bomb tests were carried out in Nevada in the 1950s and 1960s. 1664 These tests released different types of radioactive material into the atmosphere. 1665 Which of these radioactive materials are you aware of? 1666 1667 IF AWARE OF MORE THAN ONE MATERIAL: Are you concerned about some 1668 of these radioactive substances more than others? Why? 1669 1670 Before proceeding, I’d like to provide you with some additional background. One of 1671 the radioactive materials released from the Nevada tests was Iodine 131, commonly 1672 referred to as I-131. As you are probably aware, some epidemiological studies have 1673 found an association between exposure to I-131 and the risk of thyroid cancer. In 1674 addition, I-131 may also be related to other types of thyroid disease, such as 1675 hypothyroidism or an underactive thyroid gland, hyperparathyroidism, a condition in 1676 which the parathyroid glands located next to the thyroid become overactive, and 1677 noncancerous thyroid growths. While everyone in the United States experienced 1678 some exposure to the I-131 fallout, those in areas adjacent to the Nevada Test Site, 1679 downwind, and in other areas of the country where wind patterns served to increase 1680 fallout were most heavily exposed. These risks may be highest for young children 1681 who drank milk and lived in high fallout areas during the time of the tests. 1682 1683 [INTERVIEWER NOTE: Read high-exposure state list only if interview asks about 1684 the heavily affected region: Some adjacent states with high county exposure rates are 79 I-64
    • 1685 Colorado, Idaho, Kansas, Minnesota, Missouri, Montana, Nebraska, Nevada, South 1686 Dakota, Utah.] 1687 1688 In 1997 and 1999, two documents regarding the Nevada tests were released to the 1689 public. The National Cancer Institute or NCI released results of a study that assessed 1690 U.S. residents’ possible exposure to radioactive Iodine-131 fallout during and shortly 1691 after the nuclear bomb tests. 1692 1693 In addition, the National Academy of Science’s Institute of Medicine or IOM 1694 released a review of the NCI’s methods and findings. This review also included 1695 recommendations on educating the general public about I-131 and advising 1696 physicians on how to approach patients who may have questions about I-131. 1697 16986. How familiar are you with the NCI and IOM reports, if at all? 1699 17007. If FAMILIAR: Do these reports provide your organization with the information you 1701 need to communicate with your key audiences about this issue? 1702 1703 IF YES, PROBE: What information is useful? 1704 1705 IF NO, PROBE: Why haven’t the reports been useful? 1706 17078. Aside from what is provided by the NCI and IOM reports, what else does your 1708 organization know about this issue? 1709 1710 PROBE: Where has your organization gotten that information? 1711 1712 How has that information been useful? 1713 17149. What additional information do you need to understand the issues involved with 1715 I-131? 1716 171710. Does your organization have a position on the issues surrounding I-131 exposure 1718 from the Nevada Test Site? 1719 1720 IF YES: What is that position? 1721 1722 What specific concerns about I-131 exposure does your organization have? 1723 1724 1725III. EDUCATIONAL EFFORTS (10-15 minutes) 1726 17271. Residents of the U.S. were not uniformly exposed to I-131 fallout. In addition to 1728 factors such as geography and residential history, the dose of radiation individuals 1729 may have received varies by other factors, like age and dietary patterns. 1730 80 I-65
    • 1731 In your opinion, who needs to be informed about the possible risks of associated with 1732 the I-131 emitted by the nuclear tests? Should everyone in the U.S. be the focus, or 1733 should information be more targeted to those who may have been more heavily 1734 exposed? 1735 1736 [INTERVIEWER NOTE: Read high exposure state list only if interview asks about 1737 the heavily affected region: Some adjacent states with high county exposure levels 1738 are Colorado, Idaho, Kansas, Minnesota, Missouri, Montana, Nebraska, Nevada, 1739 South Dakota, Utah] 1740 17412. What information do you think people who were heavily exposed need about I-131? 1742 1743 IF THEY BELIEVE GENERAL PUBLIC SHOULD BE INFORMED: Which of 1744 these types of information do you think the general public should know? 1745 17463. Now I’m going to read you a list of different types of educational information that 1747 could be provided. Please rate how helpful each would be on a scale from 1 to 5 1748 with 1 meaning not helpful at all and 5 meaning very helpful. 1749 1750 a. Potential exposure levels based on factors like geography and age 1751 b. Dose information, an estimate of the amount of radiation actually absorbed 1752 by the thyroid) 1753 c. Risk information about potential health effects 1754 d. Risk comparisons, which quantify risk levels in various contextual ways to 1755 aid understanding 1756 e. Information about scientific uncertainties surrounding the estimates and 1757 associations between cause and effect 1758 17594. What do you think would be the most effective way to reach these populations? 1760 1761 PROBE: Should education be conducted on a national, regional or local level? 1762 Why? 1763 17645. The IOM report concludes that the available science does NOT warrant routine 1765 clinical screening for thyroid cancer in the general population or within subgroups of 1766 the population as an intervention strategy. Do you think that the general population 1767 or any groups within the population need to be screened? Why or Why not? 1768 1769 The IOM report suggests that the general public be targeted with educational 1770 information about their possible exposure to I-131 from the nuclear bomb test 1771 fallout. It also suggests that information be provided to health care providers so they 1772 can answer any questions that members of the public may ask them about the fallout 1773 and potential health consequences such as thyroid cancer. 1774 17756. How effective do you think this approach would be in educating the general public 1776 about I-131 fallout from the nuclear tests at the Nevada Test Site? Why? 81 I-66
    • 1777 17787. What else, if anything, do you think would need to be done to better educate the 1779 general public about the issue of I-131 exposure? 1780 17818. Overall, who do you think should implement these efforts? Who should NOT 1782 conduct them? 1783 1784 PROBE: Government agencies, non-profit organizations, or advocacy groups? 1785 National, regional, state, or local level? 1786 1787 IF FEDERAL GOVERNMENT AGENCIES: Which government agencies do you 1788 think should implement the efforts? (PROBE: CDC, EPA, NCI, DOE) 1789 1790 (INTERVIEWER NOTE: If regional, state, or local organizations are suggested, 1791 collect information that would be useful for future contact.) 1792 17939. Would your organization want to play a role in efforts to educate the public about 1794 possible I-131 exposure from nuclear tests conducted at the Nevada Test Site? 1795 1796 IF YES: Which publics or groups would your organization want to play a role in 1797 educating? 1798 1799 What would that role be? 1800 1801 How would that role fit in with your organization’s mission, goals, values, and 1802 activities? 1803 180410. Now, I’m going to read you a list of materials. Please indicate on a scale from 1 to 5 1805 how helpful each would be to your organization (with 1 meaning not helpful at all 1806 and 5 meaning very helpful). 1807 1808 a. Stand-alone materials such as brochures and fact sheets 1809 b. Information kits 1810 c. Videos 1811 d. In-person meetings 1812 e. Conferences/group meetings 1813 f. Web-based materials 1814 g. Would any other types of materials be helpful? 1815 1816 1817IV. CLOSING (2 MINUTES) 1818 1819Thank you very much for speaking with me today. NCI and CDC are working together on 1820this project to provide information on this issue to the public and health care providers. If 1821you have any questions or if you would like to receive materials about the Nevada tests and 1822I-131 fallout, please call Kelli Marciel at the National Cancer Institute at 301-496-6667. 82 I-67
    • 1823 1824 I.5 Key Focus Group Findings on I-131 1825 Exposure 1826 from the Nevada Test Site: Preliminary Findings 1827 from Public and Physician Groups 1828 1829 1830 1831 1832 1833 1834 1835 1836 1837 1838 Prepared by: 1839 1840 Office of Cancer Communications 1841 National Cancer Institute 1842 31 Center Drive MSC-2580 1843 Building 31, Room 10A03 1844 Bethesda, MD 20892-2580 1845 1846 1847 1848 January 2000 83 I-68
    • 1849 KEY FOCUS GROUP FINDINGS ON I-131 EXPOSURE FROM THE 1850 NEVADA TEST SITE: PRELIMINARY FINDINGS FROM 1851 PUBLIC AND PHYSICIAN GROUPS 1852 1853 1854 1855 Table of Contents 1856 1857 Page 1858 1859I. INTRODUCTION I-70 1860 1861II. METHODOLOGY I-70 1862 1863III. KEY FINDINGS I-73 1864 1865 A. Lower-Exposure Public I-74 1866 B. Higher-Exposure Public I-78 1867 C. Primary Care Physicians I-81 1868 1869IV. ATTACHMENTS I-86 1870 1871 A. Participant Screening Questionnaires 1872 B. Moderator’s Topic Guides 84 I-69
    • 1873I. INTRODUCTION 1874 1875 The National Cancer Institute (NCI) and Centers for Disease Control and Prevention 1876 (CDC) are designing a national campaign to implement Institute of Medicine (IOM) 1877 recommendations to communicate to Americans the potential health effects of 1878 Iodine-131 (I-131) radiation released during atmospheric testing in Nevada during the 1879 1950s and 1960s. To inform this effort, Office of Cancer Communication (OCC) 1880 conducted six focus groups during December 1999 with members of the higher- 1881 exposure public, the lower-exposure public, and primary care physicians. Primary 1882 objectives of this research were: 1883 1884 • To gauge participants’ awareness and knowledge of I-131 radiation fallout 1885 from the Nevada Test Site (NTS), as well as the potential risk for thyroid 1886 cancer and other non-cancerous thyroid conditions resulting from this 1887 exposure; 1888 • To determine whether participants perceive themselves or anyone else as being 1889 at-risk for health problems resulting from I-131 exposure and, if so, how 1890 concerned participants are about such risk; 1891 • To evaluate participants’ reactions to IOM recommendations which discourage 1892 mass screening for thyroid cancer, but advocate for an educational campaign to 1893 communicate to Americans the potential health effects of I-131; and 1894 • To gain a better understanding of the information needs and wants of the 1895 general public and health care professionals. 1897 Preliminary findings from the focus groups are presented in this report. These findings 1898 will be used to help determine the direction and scope of further research for the 1899 campaign. 1900 1901II. Methodology 1902 1903 Audience Segments 1904 1905 A total of six focus groups were conducted with three audience segments, referred to 1906 as the “higher-exposure public,” the “lower-exposure public,” and “physicians.” The 1907 higher-exposure public was defined as adults ages 39-64 who had lived in at least one 1908 of 18 states exposed to high levels of I-131 for at least 5 years from birth to age 15.6 1909 The lower-exposure public was defined as adults 34-64 years of age who had NOT 1910 lived in one of the 18 higher-exposure states from birth to age 15. Conducting 1911 research with both the higher- and lower-exposure public was done to obtain a 856 The higher-exposure and lower exposure public definitions were extracted from NCI’s report, “Estimated 86Exposures and Thyroid Doses Received by the American People from Iodine-131 in Fallout Following Nevada 87Atmospheric Nuclear Bomb Tests: A Report from the National Cancer Institute” (NIH Pub #97-4264), which 88outlined the key risk factors due to I-131 exposure. Participants had to be ages 39 to 64 because that is the 89present age of the individuals who were ages 0 to 15 during the time of the Nevada testing. The 18 states 90designated as high exposure by the report were: Arkansas, Colorado, Idaho, Illinois, Iowa, Kansas, Minnesota, 91Missouri, Montana, Nebraska, Nevada, North Dakota, Oklahoma, South Dakota, Utah, Vermont, Wisconsin, 92and Wyoming. 93 I-70
    • 1912 preliminary sense of how risk status might affect one’s awareness, knowledge, and 1913 concerns about the Nevada Test Site and I-131 health implications. 1914 1915 Physicians were defined as general practitioners, family physicians, or general 1916 internists who had been practicing medicine for at least three years in a high-exposure 1917 state. The three-year criterion ensured that physician participants had been in practice 1918 long enough to have some chance of seeing patients with radiation issues or health 1919 effects, and that they had been practicing in the surrounding area long enough to be 1920 familiar with their communities. Research was conducted with primary care 1921 physicians, because past research has shown that they are the most trusted source of 1922 both health care and health information. 1923 1924 A total of 51 people participated in the focus groups: 33 were members of the higher- 1925 exposure or lower-exposure public and 18 were physicians. The six focus groups 1926 were structured as follows: 1927 Number of Location Date and Time Audience Segment Participants Philadelphia, PA December 7, 1999 Lower-exposure 9 6:00-7:30 PM public Philadelphia, PA December 7, 1999 Lower-exposure 7 8:00-9:30 PM public Omaha, NE December 13, 1999 Higher-exposure 9 5:30-7:00 PM public Omaha, NE December 13, 1999 Physicians 9 7:30-9:00 PM Burlington, VT December 14, 1999 Higher-exposure 8 5:30-7:00 PM public Burlington, VT December 14, 1999 Physicians 9 7:30-9:00 PM 1928 1929 Focus Group Sites 1930 1931 The higher-exposure public and physicians groups were conducted in two states 1932 exposed to higher levels of I-131 radiation. Omaha, NE, was chosen because of its 1933 close proximity to the Nevada Test Site, and Burlington, VT, was included because it 1934 is farther away from the site. These locations were selected to provide an initial 1935 reading of whether geographic proximity to the Nevada Test Site would affect focus 1936 group responses, particularly perceived risk to health problems due to I-131 exposure. 1937 The lower-exposure public groups were held in Philadelphia, PA, a lower-exposure 1938 state. 94 I-71
    • 1939 1940 Participant Recruiting Criteria 1941 1942 Higher-exposure and lower-exposure individuals were recruited in advance of the 1943 focus groups. The screening questionnaire was designed to separate out people with a 1944 personal history of thyroid cancer or disease, individuals having an immediate family 1945 member with a history of thyroid disease, or individuals who self-reported that they 1946 were familiar with the issue of radioactive fallout from nuclear testing. The reason for 1947 excluding these individuals was the desire to talk with people for whom the I-131 1948 issue is not already salient because of personal knowledge or experience. Clearly, any 1949 information campaign which is developed will have to address those who are already 1950 concerned about the issue, but it will also need to address the concerns and 1951 information needs of a potentially much larger number of people who will become 1952 aware (through the campaign) they may have a health risk due to I-131 exposure. It is 1953 this latter group – those not already knowledgeable or savvy about their potential risk 1954 – that the focus groups sought to speak with7. 1955 1956 In addition to the above criteria, the screening criteria ensured that the groups would 1957 contain a mix of women and men, a mix of races, and participants whose educational 1958 levels ranged from a high school graduate through college graduate. Copies of the 1959 recruitment screeners for the public and physician groups can be found in Attachment A. 1960 Number of Number of Participants Participants Number of (Higher- (Lower- Participants exposure) exposure) (TOTAL) Gender Female 8 9 17 Male 9 7 16 Race or Ethnicity White 11 11 22 Black 4 5 9 American Indian 2 0 2 Education High school degree 3 5 8 Some college or technical 8 8 16 school College degree 5 3 8 Not specified 1 0 1 1961 1962 1963 Topic Guide Development 1964 957 It should be noted that earlier research, in the form of in-depth interviews, was conducted in November 1999 96with advocates, scientific experts, and public health experts to obtain the viewpoint of those more cognizant of 97the I-131 health issue. 98 I-72
    • 1965 The moderator’s guides for the general public and physicians’ groups were designed 1966 to: a) measure initial awareness, knowledge and concern about the Nevada nuclear 1967 testing in the 1950s and 1960s; b) assess reactions to information presented during the 1968 groups about the I-131 exposure and its possible relationship to thyroid cancer and 1969 other non-cancerous thyroid disease; and c) gather opinions about the IOM screening 1970 recommendations as well as suggestions about implementing a communication 1971 campaign. 1972 1973 After participants were asked about their general awareness, knowledge and concern, 1974 they were shown a newspaper article from the Chicago Sun-Times dated August 2, 1975 1997, along with a fact sheet and map illustrating exposure patterns across the U.S. 1976 They were then asked questions to elicit their reaction to the information. The 1977 newspaper article was selected from a sample of press coverage appearing after the 1978 release of the NCI report, “Estimated Exposures and Thyroid Doses Received by the 1979 American Public from Iodine-131 in Fallout Following Nevada Atmospheric Nuclear 1980 Bomb Tests.” Potential articles were judged on their objectivity in communicating 1981 basic facts about the I-131 exposure and its potential relationship to thyroid cancer. 1982 1983 Each focus group was two hours in length and was conducted by a male moderator in 1984 his forties. Participants were paid for their participation. A copy of the topic guide, as 1985 well as the stimulus materials, can be found in Appendices B and C. 1986 1987 Limitations 1988 1989 It should be noted that focus groups are a qualitative research technique which provide 1990 useful, detailed insights into the target audience’s perceptions and motivations. 1991 Findings from qualitative research, however, cannot be projected to a larger audience. 1992 Rather, they are intended to provide guidance and direction in determining the best 1993 approach for communicating with key audiences about cancer risk research. In 1994 addition, findings from focus groups should be considered preliminary, laying the 1995 groundwork for further research with key target audiences. 1996 1997III. KEY FINDINGS 1998 1999 The remainder of this report presents the main findings from the focus groups. 2000 Findings related to the lower-exposure public, the higher-exposure public, and the 2001 physicians’ groups are presented separately in order to give the reader an overall 2002 profile of each audience. However, it should be noted that there were many 2003 similarities across the three audience segments, particularly between the lower- and 2004 higher-exposure groups. 2005 99 I-73
    • 2006 A. Lower-Exposure Public 2007 2008 Awareness, Knowledge & Concern Before Reading Newspaper Article and Fact Sheet 2009 2010 • Participants were concerned about a broad range of environmental concerns, 2011 including noise and water pollution, trash disposal, power plants, power lines, 2012 exhaust from vehicles, and “radiation” from computers. 2013 2014 • Participants were generally aware or had some vague recollection of the tests 2015 conducted at the Nevada Test site. The tests in Nevada were brought up by a 2016 few participants and then seemed to “ring a bell” for others who indicated a 2017 vague awareness of them. 2018 2019 • Several participants in each group knew the tests were conducted around the 2020 time of the 1950s or 1960s, but one thought tests had continued throughout the 2021 1980s. 2022 2023 • Although participants were aware of the Nevada Test Site, they had little 2024 specific information about where their knowledge came from. No one knew 2025 about the NCI or IOM reports, or any other government reports on the issue. 2026 A couple of participants recalled seeing a movie about the Nevada Test Site 2027 called “Black Rain.” Other participants mentioned television, and one got 2028 more specific and mentioned documentaries on programs like Nova and 60 2029 Minutes. 2030 2031 • None of the participants had specific knowledge of different types of radiation 2032 or radiation-induced health effects. Most expressed health concerns about 2033 “deformities” or “genetic alterations.” One participant said the tests left people 2034 “crippled.” Another said it could cause skin problems similar to those that 2035 resulted from “Agent Orange.” Participants were particularly concerned about 2036 radiation-related illnesses being “passed through the genes.” 2037 2038 • Participants felt little or no concern that they would suffer any negative health 2039 effects from the Nevada tests. Most did not consider themselves to be at risk 2040 and felt it was more of a concern for other people. One participant said, “If I 2041 lived out there I’d be concerned.” Another said it was a problem for “those 2042 military people who were there at the time.” 2043 2044 Concerns & Perceptions of Risk After Reading Newspaper Article and Fact Sheet 2045 2046 • Participants were provided with a newspaper article and additional facts 2047 regarding the association between the Nevada tests and thyroid cancer, risk 2048 factors that increase the likelihood of exposure, examples of higher and lower 2049 exposure areas, and possible associations between I-131 and two other types of 2050 non-cancerous thyroid disease: hypothyroidism and hyperparathyroidism. 100 I-74
    • 2051 Questions were then asked to gauge their level of concern, perceptions of risk, 2052 and opinions about actions that should be taken. 2053 2054 • The newspaper article and fact sheet raised levels of suspicion among many 2055 respondents. When asked about their initial reaction to the materials, many 2056 made comments like “there must be a big lawsuit coming” or referred to the 2057 newspaper article as a “scare tactic” no different from what they usually see in 2058 the news. 2059 2060 • Responses to the actual content of the material varied and included responses 2061 such as “frightening,” surprise about the fact that “everyone was exposed” or 2062 the problem was so “widespread” and feelings of “sadness because children 2063 were affected.” Others said the information was just “another thing to worry 2064 about.” 2065 2066 • Even after reading the newspaper article and fact sheet, participants still did not 2067 feel a high level of personal concern about their risk of thyroid cancer or other 2068 non-cancerous thyroid disease from the Nevada Test Site 1-131 exposure. A 2069 few said there were more important health risks to worry about like stroke and 2070 heart attack. One respondent who stated that she has hypothyroidism said the 2071 information made her wonder about the possible connection to the Nevada Site, 2072 but even she did not seem overly concerned. Another said that the radiation 2073 had a “short half life” and no longer posed a risk because it was “long gone.” 2074 2075 • When asked who is most at risk, participants thought the exposure posed a 2076 significant problem primarily to people living closer to the site. One said it 2077 was just not “plausible” that the radiation could cause problems in people 2078 thousands of miles away, and the rest of the group agreed. One person 2079 emphasized that she was still concerned about “other people being sacrificed.” 2080 2081 • Few participants seemed to make the connection that they are the people who 2082 were children at the time of the tests and therefore at some level of risk. The 2083 length of time that has passed since the tests occurred and the aging of those 2084 who may be at greater risk seemed to make this a difficult concept for people to 2085 comprehend. 2086 2087 Actions Needed 2088 2089 • While some participants said they would like more information about I-131 2090 exposure from the Nevada Tests, few seemed to want it out of concern for their 2091 own health. Most wanted more information in order to clear up what they 2092 perceived as discrepancies in the newspaper article. More participants in the 2093 first group wanted additional information than did those in the second group. 2094 A few participants said they didn’t want more information because the issue 2095 “does not affect me” or “it is someone else’s problem.” One participant said it 101 I-75
    • 2096 was like “AIDS” in the sense that “sometimes you just don’t want to know if 2097 you have a problem or not.” 2098 2099 • Among the few who wanted more information, interest focused primarily on 2100 more conclusive information on the association between I-131 and 2101 development of thyroid cancer, why the study took 14 years, and why it was 2102 still going to take more time to know whether people are “going to get cancer 2103 from the tests or not.” 2104 2105 • In general, thyroid screening and the false positives associated with screening 2106 were difficult concepts for people to understand. 2107 2108 • Reactions to the IOM recommendation not to conduct screening were mixed. 2109 Reasons for not supporting the IOM recommendation included statements like 2110 “If there is anything the government can do, it should be done” or “It sounds 2111 like the government is copping out.” Participants who supported screening 2112 stressed the individual’s right to choose, rather than concern about whether 2113 they themselves should (or might elect to) be screened. 2114 2115 • Proponents of the IOM recommendation expressed other views. One 2116 participant said screening would just cause a “panic.” Another suggested 2117 screening in “limited areas.” And one, who inaccurately thought cancer could 2118 be detected by a blood test, kept asserting that blood tests should be conducted 2119 because they would not cause anyone any harm. 2120 2121 • Regardless of whether or not they agreed with the IOM screening 2122 recommendation, many thought each individual should have the final say in 2123 whether or not to be screened. 2124 2125 Educational Effort: Who Should Conduct It? 2126 2127 • Most participants thought government should be involved in an educational 2128 effort because the government was “responsible” for what happened. Many 2129 individuals thought the American Cancer Society would be appropriate. Other 2130 groups mentioned included the Red Cross, Greenpeace, local and city health 2131 centers and other medical groups. A few thought a combination of government 2132 and non-government groups would be best. 2133 2134 • When asked what organizations should not be involved, some said the federal 2135 government because it “caused the problem” and therefore would not be 2136 trusted. A few said that only the part of government which caused the problem 2137 (i.e., “the military”) should not be involved. One participant expressed distrust 2138 of the Environmental Protection Agency (EPA) and said that agency should not 2139 take part. 2140 102 I-76
    • 2141 • When probed about the appropriateness of the National Cancer Institute’s 2142 involvement in an educational effort, participants said they had never heard of 2143 the institute. One participant said he thought the National Cancer Institute 2144 might be part of the National Institutes of Health, which may be associated 2145 with Johns Hopkins. Another participant then said the National Institutes of 2146 Health was a “research organization” that might be affiliated with that “group 2147 out of Atlanta,” prompting another respondent to mention the “CDC.” 2148 2149 Ethical Considerations 2150 2151 • Participants were generally divided over whether there was good reason for 2152 conducting the Nevada bomb tests during the 1950s and 1960s. Some said the 2153 tests were necessary to ensure the safety of Americans during the Cold War. 2154 Others said that it is “never right to sacrifice anyone” and that the nuclear 2155 testing “should not have been done because of the problems it caused.” One 2156 participant also mentioned that the public could have been better protected 2157 from the radiation fallout at the time of the nuclear testing. 2158 2159 • Several participants expressed the opinion that “the government” (no agency 2160 specified) will always keep secrets and will never disclose the “full story” 2161 about nuclear testing pertaining to the past, present, or future. 2163 • A couple of participants said that, in addition to being informed about the 2164 Nevada bomb testing and its resultant health effects, they would want 2165 assurance that nuclear testing would never happen again. Most of the other 2166 participants, however, took the viewpoint that the nuclear testing was over and 2167 that nothing could be done about it. In the words of one participant, “You can’t 2168 right a wrong.” 2169 2170 B. Higher-Exposure Public 2171 2172 Awareness, Knowledge & Concern Before Reading Article and Fact Sheet 2173 2174 • Participants expressed a broad range of general concerns about environmental 2175 hazards, from air and water pollution to lead paint, but provided few specifics. 2176 One participant said she was worried about “carcinogens...that are just 2177 everywhere nowadays.” 2178 2179 • Participants had little knowledge about nuclear testing in general or the Nevada 2180 Test Site in particular. A few participants could name locations in the U.S. 2181 where nuclear testing has been conducted, including “the Pacific,” “the West,” 2182 and the state of Nevada. A couple of these participants thought testing was still 2183 going on in these locations. Only a few recalled specific dates of the nuclear 2184 testing, expressing a vague recollection that “there was some nuclear testing 2185 that went on in the 1950s and 1960s.” Participants had no specific knowledge 2186 of different types of radiation or radiation-induced health effects from the 103 I-77
    • 2187 Nevada Test Site. Several expressed the view that the government has kept 2188 secrets about nuclear testing. 2190 • Most participants could not recall the source of their information about the 2191 Nevada nuclear tests. A few vaguely recalled hearing something in “the news” 2192 or through “a documentary.” One participant, for example, recalled seeing a 2193 program on the History Channel that “had something to do with radiation 2194 exposure and military men.” Another said she thought the Discovery Channel 2195 might have run a documentary about the issue in the not too distant past. 2196 Another participant remembered some media coverage happening “when 2197 people were invited to watch some above-ground testing with special glasses.” 2198 Although she couldn’t recall the specifics, she characterized the event as “a real 2199 big deal.” 2200 2201 • Participants initially expressed little concern about suffering any negative 2202 health effects from the Nevada tests. One participant, describing the tests as 2203 “underground tests,” said he hoped the people conducting the tests now were 2204 protecting the environment to avoid any “contamination of the atmosphere or 2205 water supply.” Another participant responded by saying it was more important 2206 to be concerned about the effects of such tests on people and animals than the 2207 environment. Another emphasized that people should worry more about the 2208 present than the past. One Vermont participant expressed little concern 2209 because of living far away from the Nevada Test Site (Note: this perception 2210 later changed when participants saw a map illustrating that radiation fallout had 2211 been carried from the West to the East). 2212 2213 Perceptions of Personal Risks & Concerns After Reading Article and Fact Sheet 2214 2215 • Prior to seeing the article and fact sheet, participants were asked whether they 2216 remembered hearing anything in the news about two years ago. None 2217 remembered anything too specific. A couple of participants said they 2218 remembered hearing something, but they either could not recount the details or 2219 mentioned other events such as the nuclear testing in India and Pakistan. 2220 2221 • The newspaper article and fact sheet initially evoked an emotional reaction 2222 from some participants. Some Nebraska and Vermont participants said they 2223 were “shocked” and that the information made them feel “unsafe.” However, 2224 these emotional reactions dissipated quickly after the first few minutes of 2225 conversation. 2227 • When asked who in the population is most at risk, most participants in 2228 Nebraska and Vermont immediately noted that people living in their own 2229 geographical areas were exposed, often referring to the color map of exposure 2230 levels. Comments like, “We are in the red” or “It is right over us” were fairly 2231 frequent during the course of the groups. Few participants, however, fully 104 I-78
    • 2232 comprehended that they might also be at risk because they were children at the 2233 time of testing and may have consumed contaminated milk. 2234 2235 • Despite some initial surprise over seeing the “red spots,” personal concern 2236 about developing cancer or non-cancerous thyroid disease was minimal. Most 2237 participants said they were not too concerned because: 2239 • They cannot change the past 2240 • They need to focus on the future 2241 • They question the credibility of some of the information in the article 2242 • They need more information to determine their true risk 2243 • It would be difficult to prove that any thyroid occurrence is actually 2244 caused by I-131 exposure 2245 • They have other more immediate health concerns such as heart 2246 disease, high blood pressure, prostate cancer, and breast cancer 2247 • They have other (non-health) concerns such as neighborhood violence 2248 • Thyroid problems have not surfaced thus far after routine checkups 2249 • The chances of getting thyroid cancer are small 2250 2251 As one participant explained, “I’m sure we probably read about these nuclear 2252 tests at one time but then forgot about them. It’s not the ‘here and now.’ The 2253 only reason we are thinking about it now is because you are making us think 2254 about it.” 2255 2256 • The issue of whether or not their children or spouses could be affected 2257 resonated more with participants than their own personal risk. A few asked 2258 questions about whether or not the effects of the exposure could be “passed 2259 down.” Another said, “If we were affected, that means someone in our family 2260 could be affected. How are offspring affected?” One person was worried that 2261 the exposure could have caused “a flaw in the [genetic] system that will keep 2262 getting passed down.” Another participant, still misunderstanding the time 2263 period of exposure, said she was glad her children don’t drink milk. 2264 2265 • A couple of participants said they would worry more about getting other types 2266 of cancers from the tests as opposed to developing thyroid problems. One 2267 participant asked, “Why does all this focus on the thyroid?” Another 2268 participant said he thought skin and bone cancer might be more likely problems 2269 based on what happened to the people who were bombed in Japan. 2270 2271 Actions Needed 2272 2273 • Throughout the discussions, participants raised more questions than personal 2274 concerns about the tests. Questions that have not already been mentioned include: 2276 -- Were all the tests underground? 2277 -- How long does the I-131 fallout last? What is the half-life? 105 I-79
    • 2278 -- Can radiation sink into the ground? If so, can it rise back above the 2279 surface of the ground? 2280 -- Was the information on the fact sheet compiled during the time of the 2281 testing or now? 2282 -- Weren’t the tests conducted in the desert so they wouldn’t harm any 2283 people, plants or animals? 2284 2285 • The majority of participants agreed that a public information campaign would 2286 be appropriate. One participant said, “The more people know, the better.” 2287 However, a couple individuals in the groups noted that it would be important to 2288 conduct the campaign carefully so people don’t panic needlessly. 2289 2290 • The majority of participants were not supportive of the IOM recommendation 2291 against screening. Most thought people should have the option to decide 2292 whether or not they needed to be screened. As one participant put it, “If they 2293 think it is relevant for them and they want to have it done, this should override 2294 the recommendation.” 2296 • Several participants requested more information about how to get tested for 2297 thyroid disease, including where to go and what the test involves. One 2298 respondent suggested providing information about how to check one’s own 2299 thyroid gland for lumps or problems. 2300 2301 • A couple of participants were concerned that mandatory screening might cause 2302 a panic. This prompted one participant to suggest a campaign to inform 2303 doctors, so doctors could then decide whether or not a patient needed 2304 screening. A few others agreed with this recommendation. 2305 2306 • A few participants focused on compensation issues related to screening. One 2307 thought the government needed to pay for the screening, particularly for people 2308 with no insurance, since it was the government that caused the problem. 2309 Another participant questioned the motive behind the IOM recommendation, 2310 saying insurance companies and medical doctors were probably trying to get 2311 out of paying for the screening. One participant said those who were hurt 2312 should get “a big check” from the government and then laughed. 2313 2314 • A few participants thought that additional research was needed to develop a 2315 less-invasive screening test for thyroid cancer so more people can get screened 2316 without being harmed. Several also wanted more conclusive evidence showing 2317 that I-131 does cause health problems. 2318 2319 Educational Effort: Who Should Conduct It? 2320 2321 • Participants had few suggestions about who should conduct an educational 2322 effort. When probed, a few said the federal government should head the effort 2323 since it was responsible for the exposure; several specifically said the Public 106 I-80
    • 2324 Health Service and Centers for Disease Control and Prevention. In addition, a 2325 few participants indicated that their local governments should be responsible. 2326 Another participant said that “public health organizations that do things like 2327 vaccines” would be appropriate. Other organizations mentioned were Blue 2328 Cross, EPA, and the American Cancer Society. 2329 2330 • A few participants thought that people would be best educated by their own 2331 personal doctor. One participant suggested using an article in a medical society 2332 journal to educate physicians. 2333 2334 • When asked if the federal government needed to stay out of the effort, only a 2335 few participants commented. One said yes because “they lied once and they’ll 2336 do it again.” Another participant thought it was okay for the government to 2337 conduct the effort “because the people in government today are not the same 2338 people as 40 years ago.” Some participants felt that local government would be 2339 better, explaining that local government is more personal and less likely to 2340 withhold information. 2341 2342 Ethical Considerations: 2343 2344 • Ethical issues related to the Cold War were brought up at two different points 2345 during the focus groups -- at the very beginning when participants were asked 2346 for their concerns about consequences from the Nevada tests and then again 2347 after reading the article. A few participants said testing needed to be conducted 2348 for the U.S. to maintain the “balance of power.” 2350 • Only a couple of individuals commented when asked why it was or why it was 2351 not important to educate the public about what happened. One participant said 2352 it was important because people were “exposed without their knowledge.” 2353 Another participant was unsure whether an educational effort was justified 2354 because “there was no real thyroid cancer outbreak.” 2355 2356 2357 C. Primary Care Physicians 2358 2359 Awareness, Knowledge & Concern Before Reading Article and Fact Sheet 2360 2361 • In general, physicians had vague memories but little actual knowledge about 2362 nuclear weapons tests conducted in the United States. A couple of participants 2363 said they had heard something about the issue in the last few years, but could 2364 not provide specifics. One participant said he remembered hearing that the 2365 government admitted to exposing people to radiation from some tests that were 2366 conducted in the 1950s and 1960s. Another said the government also admitted 2367 that workers at a test site in the 1950s were exposed to radiation. In addition, 2368 one participant recalled that soldiers were affected by tests conducted “when 2369 the atomic bombs were developed.” Another physician recounted his father 107 I-81
    • 2370 warning him as a child to refrain from eating snow, though he did not 2371 understand why. Only one participant in Vermont knew specific details about 2372 the Nevada testing, recalling that fallout resulted from tests conducted around 2373 1946-1955, that one type of fallout was strontium 90, and that weather patterns 2374 carried fallout across the US. 2375 2376 • Participants mentioned the western United States, Nevada, Utah and New 2377 Mexico when asked about nuclear testing locations. 2378 2379 • Most participants could provide no details about specific types of radiation 2380 emitted from the tests or about specific health or non-health related 2381 consequences. 2382 2383 • Participants could not recall where they received information about the Nevada 2384 nuclear tests. One participant thought there might have been a program about 2385 the issue on the Discovery Channel at one time. Another recalled seeing a 2386 person on television who recounted watching atomic bomb tests and suffering 2387 health effects afterward. 2388 2389 • Participants expressed little concern about their patients having negative health 2390 consequences as a result of the Nevada Test Site exposures. One participant 2391 said, “I have no day-to-day concerns. It was many years ago.” Another 2392 participant thought that any serious consequences “would have shown up by 2393 now.” 2394 2395 • Only a few participants recalled having any patients ask them about negative 2396 health effects from exposure to nuclear fallout. One physician said that only a 2397 few of his patients have expressed concern, and he told them how to “watch for 2398 lumps on their thyroid and other symptoms.” Another participant said he had 2399 one patient with leukemia ask him if it might be related to the tests, but he 2400 couldn’t give the patient an answer. Another mentioned a patient with a brain 2401 tumor who once asked about the possible connection to radiation fallout. Other 2402 participants said their patients are concerned about and ask questions about 2403 cancer, but they don’t tend to relate it to the environment. 2404 2405 • Participants offered some explanations for why their patients are not concerned 2406 about radiation from the Nevada Test Site. One participant said patients are 2407 more concerned about negative health effects from nuclear power plants or 2408 disposal sites. A couple other participants said cellular telephones have 2409 recently become a big issue. Another physician noted that a majority of the 2410 population of Omaha, Nebraska, moved there from someplace else, thereby 2411 diluting the level of concern. Another said, “The testing was so long ago that 2412 people have forgotten about it; that’s what the government wants.” 2413 108 I-82
    • 2414 Awareness, Knowledge & Concern After Reading Article and Fact Sheet 2415 2416 • When asked about their initial reaction to the news article and fact sheet, 2417 participants responded with questions such as: 2419 • How did they determine radiation exposure for various areas of the 2420 country? 2421 • How was the data on dosage collected? 2422 • How can there be areas in the Central US where there was no exposure in 2423 between areas in the West and East where there was high exposure? 2424 • Do thyroid cancer rates map out similar to the radiation dosages displayed 2425 on the fact sheet? 2426 • What type of thyroid cancer might result from exposure to I-131? 2427 • Is there any scientific evidence that shows a direct link between I-131 2428 exposure and thyroid diseases of any kind? 2429 • What’s happening in Canada? 2430 2431 • Physicians repeatedly expressed a desire for sound scientific data about 2432 radiation dosage and links to negative health effects. Some even questioned 2433 the validity of the data that currently exists. One participant said he 2434 remembered a talk given by a lecturer at the National Cancer Institute who said 2435 the NCI exposure data was inaccurate and excluded some people who had 2436 higher-exposure because they drank milk from cattle. Another participant said 2437 she assumed any exposure information provided by the government would be 2438 wrong. 2439 2440 • The majority of participants said they would only be concerned for their 2441 patients if they received appropriate risk information indicating that there is a 2442 substantial increase in thyroid cancer. One participant said physicians would 2443 need to know if there was some type of evidence pointing to a “10% to 15% 2444 increase in thyroid cancer.” Another asked, “Is this a hypothetical or a true 2445 risk?” 2446 2447 • The majority of participants agreed that they would not change the way they 2448 practice medicine based on the information they had just received and the 2449 ensuing discussion. Reasons for not changing their practice were as follows: 2450 2451 • Thyroid cancer is rare (particularly in Nebraska and Vermont). One 2452 participant said she has only seen one case of thyroid cancer in twelve 2453 years. 2454 • Thyroid cancer is very survivable. 2455 • Most patients have other, more pressing health concerns such as breast 2456 cancer. 2457 • People are already “dying off from something else” by the time they get 2458 thyroid cancer. 2459 • The issue of I-131 has “fallen off the radar screen.” 109 I-83
    • 2460 • There is not enough scientific evidence to warrant a high degree of 2461 concern. 2462 • They do not want to unnecessarily alarm their patients with information 2463 that, to date is scientifically unfounded. 2464 • They already routinely check for cancerous and non-cancerous thyroid 2465 problems during regular physical exams. 2466 2467 Actions Needed 2468 2469 • When asked what should be done to address I-131 exposure from the Nevada 2470 bomb testing, participants mentioned that the environment (air, water, and soil) 2471 should be tested and that nuclear testing should be permanently banned. 2473 • Most participants thought an educational campaign targeting the public would be 2474 unnecessary and would only serve to cause undue public alarm. One participant 2475 said, “Too many things have been done in medicine before all the facts are in; we 2476 often put education before science.” Others agreed that nothing should be done 2477 until a meaningful increase in actual risk is demonstrated. A couple of 2478 participants said a public education campaign would cause “a mess.” Another 2479 stated that physicians are sometimes pressured by media coverage to do things 2480 just to put their patients’ concerns to rest. 2481 2482 • Nearly all participants agreed that a medical education campaign targeted at 2483 physicians would not be beneficial because, again, the information would not 2484 change the way they practice medicine. One participant thought some very basic 2485 information provided to physicians in higher-exposure areas may be useful just to 2486 put them “on alert.” 2487 2488 • All participants agreed with the IOM recommendation that screening at this time 2489 is unwarranted. All agreed that thyroid cancer is rare, very survivable and that 2490 false positives would result in more harm than good being done to patients. A 2491 couple of participants said they were also uncertain about the real benefits 2492 associated with early detection of thyroid cancer. One participant stated that 2493 checking everyone’s thyroid would be a “logistical public health nightmare.” 2494 2495 Educational Effort: Who Should Conduct It? 2496 2497 • If any educational effort were to be conducted, some participants thought the 2498 National Cancer Institute or the National Institute of Health would be the most 2499 appropriate sponsor because they are science-oriented. Others mentioned medical 2500 societies like the American Medical Association or their professional 2501 membership organizations such as the American Association of Family 2502 Physicians (AAFP). 2503 2504 • A couple of participants expressed concerns about sponsorship by advocacy 2505 organizations because they are not research-based and could be motivated by 110 I-84
    • 2506 self-interests. Some participants said the American Cancer Society should not be 2507 involved for this reason. When the Vermont participants were asked about the 2508 Society of Physicians for Responsible Medicine, all of them laughed and 2509 immediately discredited the group as being too politically extreme. 2510 2511 Ethical Considerations 2512 2513 • Ethical issues regarding why the nuclear tests were conducted and about 2514 individuals’ right to know triggered little interest among physician participants. 2515 2516 • Most physicians thought it would be unethical to launch any type of educational 2517 effort before there is scientific data to support the necessity of such an effort. 2518 One participant said, “It would not be a public service announcement, it would be 2519 a public disservice announcement.” 111 I-85
    • 2520 2521 2522 2523 2524 I-5 ATTACHMENTS 2525 2526 2527 I-5-A. Participant Screening Questionnaires 2528 I-5-B. Moderator’s Topic Guides 2529 112 I-86
    • 2530ATTACHMENT I-5-A 2531 OMB# 0925-0046 2532 Exp. Date 8/31/00 2533 2534 Screener for Health Focus Groups with Public 2535 2536Name: ___________________________________________________________________ 2537 2538Street Address: ____________________________________________________________ 2539 2540City: _________________________________ Zip Code: ______________ __________ 2541 2542Home Phone: ______________________ Work Phone: ___________________________ 2543 City Group Facility Date Time  Philadelphia, PA Lower risk Focus Pointe Dec. 7 6:00 PM  Philadelphia, PA Lower risk Focus Pointe Dec. 7 8:00 PM  Omaha, NE Higher risk Midwest Survey Dec. 13 5:30 PM  Burlington, VT Higher risk Action Research Dec. 14 5:30 PM 2544 2545INTRODUCTION 2546 2547Hello, my name is ___________, and I’m calling on behalf of a national, non-profit 2548organization concerned about the health and well-being of Americans. We’re talking to 2549people to learn their opinions about some important environmental and health issues. 2550I want to assure you that we’re not selling anything and that your responses will be kept 2551confidential. 2552 2553May I speak to an adult in the household? (ONCE SPEAKING TO ADULT, REPEAT 2554INTRODUCTION IF NECESSARY AND ASK:) Would you be willing to answer a few 2555questions? 2556 2557  Yes (CONTINUE) 2558  No (THANK AND TERMINATE) 2559 25601. What is your exact age? (RECORD EXACT RESPONSE AND CODE IN 2561 APPROPRIATE AGE SUBGROUP.) 2562 2563 Age: _______________ 2565  Younger than 39 (THANK AND TERMINATE) 2566  39-47 (RECRUIT 4) 2567  48-56 (RECRUIT 4) 2568  57-64 (RECRUIT 4) 2569  65 or older (THANK AND TERMINATE) 113 I-87
    • 25702. I’m going to read you a list of statements. For each one, please tell me whether you 2571 agree, neither agree nor disagree, or disagree with that statement. (READ.) 2572 Neither Agree nor Don’t Know/ Agree Disagree Disagree Refused To protect the 1 2 3 9 environment, people need (CONTINUE) (CONTINUE) (CONTINUE) (CONTINUE) to make big changes in the way they live. I am concerned about the 1 2 3 9 environment because of the (CONTINUE) (CONTINUE) (CONTINUE) (CONTINUE) potential harm to myself and my family. 2573 25743. Different areas of the country are more or less concerned about environmental issues. 2575 Thus, where we have lived can affect our opinions about the environment. 2576 2577 a. I’m going to read you a list of states, and please tell me if you lived in any of these 2578 states between the time you were born and age 15. (READ STATES IN COLUMN 2579 “a” AND CHECK ANY STATES WHERE RESPONDENT LIVED BETWEEN 2580 THE AGES OF 0-15. MULTIPLE RESPONSES ACCEPTED. 2581 2582 IF NO CHECKS ARE MADE IN COLUMN “a,” CLASSIFY AS “LOWER RISK” 2583 AND SKIP TO Q3. 2584 2585 IF ONE ORE MORE STATES ARE CHECKED, ASK Q2b FOR EACH STATE 2586 MENTIONED.) 2588 b. Did you live in [STATE] for at least 5 years? (USE COLUMN “b” TO CHECK 2589 ANY STATE(S) WHERE RESPONDENT LIVED AT LEAST 5 YEARS. 2590 2591 CLASSIFY AS “HIGHER RISK” ANY RESPONDENT WHO HAS LIVED IN AT 2592 LEAST ONE OF THE LISTED STATES FOR AT LEAST 5 YEARS BETWEEN 2593 THE AGES OF 0-15.) a. Lived in state b. At least 5 years from age 0-15 (ASK HIGHER RISK ONLY) (1) Arkansas   (2) Colorado   (3) Idaho   (4) Illinois   (5) Iowa   (6) Kansas   114 I-88
    • (7) Minnesota   (8) Missouri   (9) Montana   (10) Nebraska   (11) Nevada   (12) North Dakota   (13) Oklahoma   (14) South Dakota   (15) Utah   (16) Vermont   (17) Wisconsin   (18) Wyoming   2595 25964. Currently there are many issues about the environment under public debate, and different 2597 people are more or less familiar with them. I’m going to read you a list of specific 2598 environmental issues. For each one, please tell me whether you are “familiar,” “neither 2599 familiar nor unfamiliar,” or “not at all familiar” with that issue. 2600 Neither Familiar Nor Not at All Don’t Know/ Familiar Unfamiliar Familiar Refused Liquid waste from 1 2 3 9 chemical plants. (CONTINUE) (CONTINUE) (CONTINUE) (CONTINUE) Residual pesticides in the 1 2 3 9 water supply. (CONTINUE) (CONTINUE) (CONTINUE) (CONTINUE) Radioactive fallout from 1 2 3 9 nuclear testing. (THANK (CONTINUE) (CONTINUE) (CONTINUE) AND TERMINATE) Toxic air emissions from 1 2 3 9 coal plants used to (CONTINUE) (CONTINUE) (CONTINUE) (CONTINUE) generate electricity. 2601 26025. Since this study is also about health, I’m going to ask you some health related questions. 2603 Have you have ever been diagnosed with any of the following diseases … (READ. DO 2604 NOT RECRUIT PARTICIPANTS WHO HAVE HAD THYROID DISEASE OR 2605 CANCER.) 2606 2607  Respiratory disease (CONTINUE) 2608  Heart disease (CONTINUE) 2609  Thyroid disease (THANK AND TERMINATE) 2610  Cancer of any kind (THANK AND TERMINATE) 115 I-89
    • 26126. Have any of your immediate family members, that is, your parents, brothers or sisters, 2613 partner, or children, ever been diagnosed with any of the following diseases … (READ. 2614 DO NOT RECRUIT PARTICIPANTS WHO HAVE HAD IMMEDIATE FAMILY 2615 MEMBER DIAGNOSED WITH THYROID DISEASE.) 2616 2617  Respiratory disease (CONTINUE) 2618  Heart disease (CONTINUE) 2619  Thyroid disease of any kind, including thyroid cancer (THANK AND 2620 TERMINATE) 2621  Cancer of any other kind (CONTINUE) 26237. I have a few more questions to ask for classification purposes. Which of the following 2624 best describes your race? (READ. RECRUIT 8 WHITE AND 4 NON-WHITE. 2625 NEBRASKA FACILITY MUST RECRUIT AT LEAST 2 AMERICAN 2626 INDIAN/ALASKA NATIVE.) 2627 2628  White 2629  Black or African American 2630  Hispanic or Latino 2631  Asian 2632  Native Hawaiian/Other Pacific Islander 2633  American Indian /Alaska Native 2634 26358. Which of the following best describes your highest level of education? (READ.) 2636 2637  Less than high school degree (THANK AND 2638 TERMINATE) 2639  High school degree (RECRUIT AT LEAST 3) 2640  Some college/technical school/associates degree (RECRUIT AT LEAST 3) 2641  4-year college degree (RECRUIT NO MORE THAN 2642 3) 2643  Some graduate school or more (THANK AND TERMINATE) 2644 26459. (NOTE GENDER:) 2646 2647 Male (RECRUIT 6) 2648 Female (RECRUIT 6) 265010. Have you ever been employed in any of the following settings? 2651 Don’t Yes No Know/Refused Medical or health setting (THANK AND (CONTINUE) (THANK AND TERMINATE) TERMINATE) Advertising or market research (THANK AND (CONTINUE) (THANK AND 116 I-90
    • setting TERMINATE) TERMINATE) 2652 265311. Have you ever participated in a focus group discussion or been paid to be part of a 2654 discussion group? 2655 2656 Yes (CONTINUE) 2657 No (SKIP TO INVITATION) 2658 265912. How recently did you participate in the focus group? 2660 2661 6 months ago or less (THANK AND TERMINATE) 2662 More than 6 months ago (CONTINUE) 2663 266413. What did you talk about during the groups? (RECORD VERBATIM. DO NOT 2665 RECRUIT IF TOPICS WERE ABOUT THE ENVIRONMENT, ATOMIC BOMBS, 2666 NUCLEAR RADIATION, THYROID DISEASE, OR CANCER.) 2667 2668 _______________________________________________________________________ 2669 2670 _______________________________________________________________________ 2671 2672 ________________________________________________________________________ 2673 2674INVITATION 2675 2676Thank you for answering our questions. We’d like to invite you to take part in a focus group 2677discussion of 8-10 people. We’re talking to adults across the U.S. so that we can better plan 2678for a national program focusing on the environment and the health of Americans. Your 2679participation is very important to us. The focus group will take place [FACILITY, DATE, 2680TIME] and will last about 2 hours. Participants will be paid $_____ in cash for their time to 2681take part. We’ll also serve refreshments. Will you take part? 2682 2683  Yes (CONTINUE) 2684  No (THANK AND TERMINATE) 2685 2686Thanks for accepting our invitation. For contact purposes, may I get your name, address, 2687and daytime and evening phone numbers? (RECORD INFORMATION ON FIRST PAGE) 2688 2689We will send you a packet with a confirmation letter three to five days before the focus 2690group is held. It will include directions to the location where the discussion will take place. 2691It is very important that you arrive on time. If you need glasses for reading, please bring 2692them to the discussion. If you have any questions or find out that you cannot attend the 2693focus group, please call ___________ at __________ so that we can find someone to take 2694your place. Thank you for agreeing to take part in our study. We look forward to meeting 2695you. Goodbye. 2696 117 I-91
    • 2697(NOTE TO RECRUITER: If respondents have any questions or concerns about the focus 2698group topic, please contact Memi Miscally at Porter Novelli at 202-973-5845. Do NOT give 2699her name to respondents.) 2700 2701Recruited by: _____________________________ Date: _______________________ 2702 2703Confirmed by: ____________________________ Date: ______________________ 118 I-92
    • 2704 2705 OMB# 0925-0046 2706 Exp. Date 8/31/00 2707 2708 Screener for Health Focus Groups with Physicians 2709 2710 2711Name: ___________________________________________________________________ 2712 2713Street Address: ____________________________________________________________ 2715City: ________________________________ Zip Code: __________________________ 2717Home Phone: _____________________ Work Phone: ___________________________ 2718 City Group Facility Date Time  Omaha, NE Physicians Midwest Survey Dec. 13 7:30 PM  Burlington, VT Physicians Action Research Dec. 14 7:30 PM 2719 2720 2721INTRODUCTION 2722 2723Hello, my name is ___________, and I’m calling on behalf of a national, non-profit 2724organization concerned about the health and well-being of Americans. We’re talking to 2725physicians to learn their opinions about some important health issues. I want to assure you 2726that we’re not selling anything and that your responses will be kept confidential. May I 2727speak to a physician? (ONCE SPEAKING TO PHYSICIAN, REPEAT INTRODUCTION 2728IF NECESSARY AND ASK:) Would you be willing to answer a few questions? 2729 2730  Yes (CONTINUE) 2731  No (THANK AND TERMINATE) 2732 27331 Which of the following best describes the kind of medicine you practice? (READ.) 2734 2735 a. General practice (CONTINUE) 2736 b. Family practice (CONTINUE) 2737 c. General internist (CONTINUE) 2738 d. Other (THANK AND TERMINATE) 2739 27402. Are you a practicing physician—that is, do you see patients on a regular basis? 2741 2742 a. Yes (CONTINUE) 2743 b. No (THANK AND TERMINATE) 2744 119 I-93
    • 27453. Which of the following best describes how old the majority of your patients are? Are 2746 they … (READ.) 2747 2748 a. Younger than 18 (THANK AND TERMINATE) 2749 b. 18-64 (CONTINUE) 2750 c. 65 or older (THANK AND TERMINATE) 2751 27524. Do you see approximately equal numbers of males and females? 2753 2754 a. Yes (CONTINUE) 2755 b. No (THANK AND TERMINATE) 2756 27575. How many years have you been practicing medicine? 2758 2759 a. Less than 5 years (THANK AND TERMINATE) 2760 b. 5 years or more (CONTINUE) 2761 27626. How long have you been practicing in the state of Nebraska/Vermont? 2764 a. Less than 3 years (THANK AND TERMINATE) 2765 b. 3 years or more (CONTINUE) 27677. Are you employed full-time by a managed care company such as Kaiser Permanente or 2768 Aetna? 2770 a. Yes (RECRUIT NO MORE THAN 2) 2771 b. No (CONTINUE) 2772 27738. Have you ever been employed in an advertising or market research setting? 2774 2775 a. Yes (THANK AND TERMINATE) 2776 b. No (CONTINUE) 2777 27789. Have you ever participated in a focus group discussion or been paid to be part of a 2779 discussion group? 2780 2781 Yes (CONTINUE) 2782 No (SKIP TO INVITATION) 2783 278410. How recently did you participate in the focus group? 2785 2786 6 months ago or less (THANK AND TERMINATE) 2787 More than 6 months ago (CONTINUE) 2788 120 I-94
    • 278911. What did you talk about during the groups? (RECORD VERBATIM. DO NOT 2790 RECRUIT IF TOPICS WERE ABOUT THE ENVIRONMENT, ATOMIC BOMBS, 2791 NUCLEAR RADIATION, THYROID DISEASE, OR CANCER.) 2792 2793 _______________________________________________________________________ 2794 2795 _______________________________________________________________________ 2796 2797 _______________________________________________________________________ 2798 2799INVITATION 2800 2801Thank you for answering our questions. We’d like to invite you to take part in a focus group 2802discussion of 8-10 people. We’re talking to physicians across the U.S. so that we can better 2803plan for a national program focusing on the health of Americans. Your participation is very 2804important to us. The focus group will take place [FACILITY, DATE, TIME] and will last 2805about 2 hours. Participants will be paid $_____ in cash for their time to take part. We’ll 2806also serve refreshments. Will you take part? 2807 2808 Yes (CONTINUE) 2809 No (THANK AND TERMINATE) 2810 2811Thanks for accepting our invitation. For contact purposes, may I get your name, address, 2812and daytime and evening phone numbers? (RECORD INFORMATION ON FIRST PAGE) 2813 2814We will send you a packet with a confirmation letter three to five days before the focus 2815group is held. It will include directions to the location where the discussion will take place. 2816It is very important that you arrive on time. If you need glasses for reading, please bring 2817them to the discussion. If you have any questions or find out that you cannot attend the 2818focus group, please call ___________ at __________ so that we can find someone to take 2819your place. Thank you for agreeing to take part in our study. We look forward to meeting 2820you. Goodbye. 2821 2822(NOTE TO RECRUITER: If respondents have any questions or concerns about the focus 2823group topic, please contact Memi Miscally at Porter Novelli at 202-973-5845. Do NOT give 2824her name to respondents.) 2825 2826Recruited by: _____________________________ Date: ______________________ 2827 2828Confirmed by: ____________________________ Date: ______________________ 2829 2830 121 I-95
    • 2831ATTACHMENT I-5-B 2832 OMB# 0925-0046 2833 Exp. Date 8/31/00 2834 2835 2836 Moderator’s Guide for I-131 Focus Groups with the General Public 2837 2838 2839 2840I. EXPLANATION AND INTRODUCTIONS (10 minutes) 2841 28421. Thanks for coming today. Your participation is very important to us; your insights 2843 will help us develop a national public health program. 28452. My name is ______ and I work for ______, an independent research company. I do 2846 not work with the sponsor of these groups, so please feel that you can give me your 2847 honest opinions—positive and negative. 2848 28493. What we’re doing today is called a focus group. You may have guessed that all of 2850 you live in the Philadelphia/Omaha/Burlington area, and for the next 2 hours, 2851 we’re going to talk about the environment and your health. 28534. I’m interested in all of your ideas, comments, and suggestions. There are no right 2854 or wrong answers. It’s important that I hear what everyone thinks, so please speak 2855 up, especially if your view is different from something someone else says. 2856 28575. We’ll audio-tape and video-tape this discussion. In addition, program planners 2858 sitting behind this mirror will observe. We’re taking these steps because everything 2859 you say is important to us, and we want to make sure we don’t miss any comments. 28616. Please talk one at a time and in a voice at least as loud as mine so that the recording 2862 equipment can pick up everything that is said. 28647. Later, we’ll go through all of your comments and use them to write a report. 2865 Remember that all of your comments are confidential. Your name will not be used 2866 in the report. 28688. If you need to use the bathroom, please go one at a time. 28709. Please turn off any beepers, pagers, or cell phones that you may have. 287210. Before we begin the discussion, please introduce yourself. Please tell us your: 2873 2874 • First name 2875 • Number of years you’ve been living in the Philadelphia/Omaha/Burlington area 2876 2877 122 I-96
    • 2878II. GENERAL AWARENESS, KNOWLEDGE, AND CONCERN (25 minutes) 2879 2880 1. What are some of the environmental issues that you’ve heard about, if any at all? 2881 Where does nuclear radiation fit into the list of issues? (SPEND ONLY A MINUTE 2882 AND THEN MOVE ON) 2883 2884 2. What words, images, or feelings come to mind when I say the word nuclear 2885 radiation? 2886 2887 3. What, if anything, have you heard about nuclear weapons tests conducted in the 2888 United States? (TRY TO OBTAIN PLACES AND DATES OF ATOMIC BOMB 2889 TESTING AND TYPES OF NUCLEAR RADIATION RELEASED) 2890 2891 2892 About 100 atomic bomb tests were conducted in the state of Nevada during the 1950s and 2893 1960s. These tests released different types of radioactive material into the atmosphere. 2894 The rest of this discussion will pertain to these tests and the nuclear radiation fallout. 2895 2896 4. Have you heard anything about these tests? IF YES: What have you heard about 2897 these tests? 2898 2899PROBE: Types of radiation released? 2900IF AWARE OF MORE THAN ONE MATERIAL: Are you concerned about some of the 2901 radioactive substances more than others? What makes you more concerned? 2902 2903 5. What, if any, questions do you have about these tests and the nuclear radiation 2904 released? 2905 2906PROBE: How about health related consequences? 2907 How about any non-health related consequences? 2908 2909 6. What, if any, concerns do you have about these tests and the nuclear radiation 2910 released? 2911 2912PROBE: How about health-related consequences? 2913 How about any non-health-related consequences? 2914 2915 7. From what sources have you gotten any information you might have? IF MEDIA: 2916 From what sources did the media get their information? For example, do you 2917 remember any specific individuals, experts or organizations that the media quoted or 2918 mentioned? (PROBE FOR AWARENESS OF NCI AND IOM REPORTS) 2919 123 I-97
    • 2920III.REACTIONS AFTER SEEING ARTICLE (30 minutes) 2921 2922Now, I’m going to give you a newspaper article (or fact sheet) to read about the Nevada 2923nuclear bomb tests. Some of this information you may already know. Please read all the 2924information carefully as we will be discussing this material in detail next. I’d like to mention one other thing. The newspaper article mentions that people were most likely to be exposed to I-131 radiation if they lived around Nevada, specifically in the states of Montana, Idaho, Utah, South Dakota, and Colorado. FOR NEBRASKA GROUPS: Please note that Nebraska is near this region and was also a highly exposed state. FOR VERMONT GROUPS: Please note that Vermont was another highly exposed state, because weather patterns carried the radiation north and east of Nevada. 29261. What are your initial reactions to this article and the additional information I’ve 2927 given you? (LEAVE OPEN DISCUSSION AROUND EMOTIONS/FEELINGS OR 2928 THE INFORMATION ITSELF) 29302. When might people living in the U.S. have been affected by I-131? During the 2931 1950s and 1960s when the tests were conducted? Now, in the 1990s? In the future, 2932 when it’s 2000 and beyond? 2933 2934You may or may not have a thorough understanding of thyroid cancer. To ensure that all of 2935us have the information we need to get through tonight’s discussion, I’d like to give you 2936some information about thyroid cancer. (SHOW BOARD) 2937 Thyroid Cancer This type accounts for 1% of all cancers. Symptoms: Lump in the neck (most common) ____________ Tight or full feeling in the neck______________ Difficulty breathing or swallowing ______________ (less common) Hoarseness______________________________ Swollen lymph nodes______________________ 29393. Based on the information provided, who do you think is at risk for thyroid cancer 2940 from the Nevada tests? What are the major factors that make someone more at risk? 2941 2942 PROBE: Different geographical areas 2943 Age 2944 Milk consumption 2945 124 I-98
    • 29464. How concerned are you personally about your risk for developing thyroid cancer as a 2947 result of these tests and exposure to the fallout? What makes you particularly 2948 concerned? At the present time, there is no scientific evidence that the amount of I-131 exposure that people received from the Nevada Site is related to any other types of thyroid disease besides thyroid cancer. Research is being conducted to find out if the amount of I-131 exposure people received could be related to other thyroid disorders. Here are descriptions of SOME of the symptoms of two disorders that some people have claimed could be related to the I-131 exposure from the Nevada Test Site. (SHOW BOARD) Hypothyroidism A condition in which the thyroid gland becomes underactive. The thyroid gland is located in the neck and affects heart rate, blood pressure, body temperature, metabolism, and childhood growth and development. Symptoms: Lack of Energy, Tiredness Depression Feeling Cold Dry, Coarse, Itchy Skin Dry, Coarse, Thinning Hair Muscle Cramps Constipation Weight Gain Hyperparathyroidism A condition in which the parathyroid glands become overactive. The parathyroid glands are located next to the thyroid and affect the body’s supply of calcium. Symptoms: Calcium Deposits Osteoporosis or Loss of Bone Density Muscular Weakness Nervousness Irritability Racing Heart Increased Perspiration Thinning of Skin Fine, Brittle Hair Frequent Bowel Movements Weight Loss 125 I-99
    • 2950 29515. How concerned are you personally about your risk of developing any of the non- 2952 cancerous thyroid diseases I mentioned as a result of the Nevada tests? What makes 2953 you concerned? 2954 29556. In comparison to other types of health risks like heart disease or stroke, how 2956 concerned are you about getting thyroid cancer? How about non-cancerous thyroid 2957 diseases? 2958 29597. Is the information I provided you with confusing or clear? What would need to be 2960 done to make it easier to understand? 29628. Would you like more information to determine how important a health issue the 2963 I-131 fallout from the Nevada tests is for you? Why or why not? What information? 2964 2965IV. EDUCATIONAL CAMPAIGN (40 minutes) 2966 29671. What, if anything, do you think should be done about I-131 and any potential health 2968 risks? 2969 2970PROBE: Public Education 2971 Screening 2972 Compensation for Medical Expenses 29742. Who should be responsible? (IF GOVERNMENT: PROBE FOR LOCAL, STATE 2975 OR FEDERAL, IF FEDERAL PROBE FOR AGENCIES) What about these entities 2976 makes them responsible? 2977 29783. What are your opinions about this recommendation? 2979 2980 In 1999, the Institute of Medicine (IOM), a panel of experts from the National Academy of Scientists congressionally mandated to advise the federal government on medical issues, released medical screening recommendations for people who may have been exposed to I-131 released from the Nevada Tests. The panel concluded that the available science does NOT warrant medical screening tests within the general population or within any subgroups of the population. The reasoning behind this recommendation is that very few people get thyroid cancer and those that do are very likely to be cured. In addition, the current method of thyroid cancer screening can produce false positives, meaning that people may be inaccurately diagnosed with thyroid cancer and consequently subjected to unnecessary fear, medication and surgery. For these reasons, the IOM felt that the evidence suggests that more harm to the public than good would be done with screening. 126 I-100
    • 2981 Do you think there is a need for a public information campaign to educate people about 2982 their possible exposure to I-131 and the potential risks associated with that exposure? 2983 29844. In your opinion, who needs to be informed about the possible risks associated with the 2985 I-131 emitted from the nuclear tests? Should everyone in the U.S. be the focus, or 2986 should information be targeted to those who may have been more exposed? Why? 2987 29885. IF GENERAL PUBLIC: What information do you think the general public needs to 2989 get? IF THOSE MORE EXPOSED: What information do you think people who 2990 were heavily exposed need to get? 2991 29926. What information do you think you personally need about the I-131 emitted from the 2993 Nevada tests and its possible health effects? 2994 29957. What do you think would be the most effective ways to get this information to people? 2996 2997PROBE: Television/radio 2998 Newspapers/magazines 2999 Conferences/meetings 3000 Interpersonal communication 3001 Brochures 3002 Internet 3003 30048. What health care professionals, if any, do you think should be involved in reaching out 3005 to people? What about these people makes them important? 3006 30079. If an educational effort is to be launched, some organization or organizations need to be 3008 responsible for implementing the effort. Are there any organizations or types of 3009 organizations that you particularly trust to implement these efforts? What about those 3010 organizations makes you trust them? 3011 3012 (PROBE: Government agencies, non-profit organizations or advocacy groups?) 3013 301410. Are there any organizations or types of organizations that should NOT be involved in 3015 implementing these efforts? What makes them untrustworthy? 3016 301711. Do you think people will trust a public education campaign that is conducted by the 3018 federal government? Would it matter what specific federal agencies are involved? 3019 Why? 3020 3021V. ADDITIONAL CONSIDERATIONS (10 minutes) 3022 30231. In your opinion, what are the main reasons why the public should be informed about 3024 the Nevada Test Site, I-131 exposure, and any potential health problems? 3025 127 I-101
    • 3026IF NECESSARY, PROBE: Some people think the government has an obligation to let 3027 people know about the exposure from the Nevada Test Site 3028 primarily because some people could have been harmed by the 3029 fallout. Other people think that regardless of the level of harm 3030 people experienced, the government has an obligation to 3031 inform the public because the public has a right to know about 3032 its government’s actions. Which of these best represents your 3033 views? Why? 30352. Based on everything you know now, what if anything, would justify the Nevada 3036 atomic bomb testing? 3037 3038IF NECESSARY, PROBE: People were exposed to radioactive material while nuclear 3039 weapons were being tested for the purpose of defending our 3040 country. What do you think about this? 3042 30433. Do you think the government would have intentionally exposed people to radioactive 3044 material or do you think the government probably didn’t know about the negative 3045 health effects that may be associated with the exposures until after the tests were 3046 already conducted? 3047 30484. What else do you think needs to be done to address the issue of I-131 fallout from 3049 the Nevada Test Site that we have not talked about? 3050 30515. How do these ethical considerations impact your trust in the government as a whole 3052 and different government agencies? 30546. Is there anything else that you think needs to be done to address the issue of I-131 3055 fallout from the Nevada Test Site that we have not talked about? 3056 3057VI. CLOSING (5 minutes) 3058 30591. CHECK WITH OBSERVERS FOR ADDITIONAL QUESTIONS. 30612. Those are all of the questions I have. Do you have any final comments? 30633. Thanks for your participation today. I have some bookmarks that can provide you 3064 with current information about what we’ve discussed this evening. Feel free to take 3065 one before you leave. 128 I-102
    • 3066 OMB# 0925-0046 3067 Exp. Date 8/31/00 3068 3069 3070 Moderator’s Guide for I-131 Focus Groups with Physicians 3071 3072 3073I. EXPLANATION AND INTRODUCTIONS (10 minutes) 3074 3075 1. Thanks for coming today. Your participation is very important to us; your insights 3076 will help us develop a national public health program. 3078 2. My name is ______ and I work for ______, an independent research company. I do 3079 not work with the sponsor of these groups, so please feel that you can give me your 3080 honest opinions – positive and negative. 3081 3082 3. What we’re doing today is called a focus group. You may have guessed that all of 3083 you are primary care physicians, and for the next 2 hours, we’re going to talk about 3084 the environment and the health of your patients. 3086 4. I’m interested in all of your ideas, comments, and suggestions. There are no right 3087 or wrong answers. It’s important that I hear what everyone thinks, so please speak 3088 up, especially if your view is different from something someone else says. 3089 3090 5. We’ll audio-tape and video-tape this discussion. In addition, program planners 3091 sitting behind this mirror will observe. We’re taking these steps because everything 3092 you say is important to us, and we want to make sure we don’t miss any comments. 3094 6. Please talk one at a time and in a voice at least as loud as mine so that the recording 3095 equipment can pick up everything that is said. 3097 7. Later, we’ll go through all of your comments and use them to write a report. 3098 Remember that all of your comments are confidential. Your name will not be used 3099 in the report. 3101 8. If you need to use the bathroom, please go one at a time. 3103 9. Please turn off any beepers, pagers, or cell phones that you may have. 3105 10. Before we begin the discussion, please introduce yourself. Please tell us your: 3106 3107 • First name 3108 • Number of years you’ve been practicing in the Omaha/Burlington area 3109 129 I-103
    • 3110II GENERAL AWARENESS, KNOWLEDGE, AND CONCERN (25 minutes) 3111 31121. What are some of the environmental issues that you’ve heard about, if any at all? 3113 Where does nuclear radiation fit into the list of issues? (SPEND ONLY A MINUTE 3114 AND THEN MOVE ON) 3115 31162. What words, images, or feelings come to mind when I say the word nuclear 3117 radiation? 3118 31193. What, if anything, have you heard about nuclear weapons tests conducted in the 3120 United States? (TRY TO OBTAIN PLACES AND DATES OF ATOMIC BOMB 3121 TESTING AND TYPES OF NUCLEAR RADIATION RELEASED) 3122 3123 About 100 atomic bomb tests were conducted in the state of Nevada during the 1950s and 3124 1960s. These tests released different types of radioactive material into the atmosphere. 3125 The rest of this discussion will pertain to these tests and the nuclear radiation fallout. 3126 31274. What, if anything, have you heard about these Nevada bomb tests conducted during 3128 the 1950s and 1960s and the resulting nuclear radiation fallout? 3130 PROBE: Types of radiation released? 3131 IF AWARE OF MORE THAN ONE MATERIAL: Are you 3132 concerned about some of the radioactive substances more than others? 3133 What makes you more concerned? 3134 31355. What, if any, questions do you have about these tests and the nuclear radiation 3136 released? 3137 31386. What, if any, concerns do you have about these tests and the nuclear radiation 3139 released? 3140 3141 PROBE: Any concerns about health or non-health related consequences? 3142 31437. Have you and your patients discussed the Nevada bomb tests and health problems 3144 resulting from the I-131 fallout radiation? If so, how often? What have you talked 3145 about? Who typically initiates the conversation—you or your patients? 31478. Relative to their other health concerns, how concerned are your patients about 3148 experiencing health problems as a result of being exposed to I-131? 31509. How concerned about I-131 health effects is your community in general? 315210. From what sources have you gotten any information you might have? IF MEDIA: 3153 From what sources did the media get their information? For example, do you 3154 remember any specific individuals, experts or organizations that the media quoted or 3155 mentioned? (PROBE FOR AWARENESS OF NCI AND IOM REPORTS) 130 I-104
    • 3156 3157III REACTIONS AFTER SEEING ARTICLE (30 minutes) 3158 3159Now, I’m going to give you a newspaper article and fact sheet to read about the Nevada 3160nuclear bomb tests. The article actually appeared in newspapers across the country, perhaps 3161even in your area. Some of this information you may already know. Please read all the 3162information carefully as we will be discussing this material in detail next. (SHOW 3163ARTICLE) I’d like to mention one other thing. The newspaper article mentions that people were most likely to be exposed to I-131 radiation if they lived around Nevada, specifically the states of Montana, Idaho, Utah, South Dakota, and Colorado. FOR NEBRASKA GROUPS: Please note that Nebraska is near this region and was also a highly exposed state. FOR VERMONT GROUPS: Please note that Vermont was another highly exposed state, because weather patterns carried the radiation north and east of Nevada. 3165 31661. What are your initial reactions to this article and the additional information I’ve 3167 given you? (LEAVE OPEN DISCUSSION AROUND EMOTIONS/FEELINGS OR 3168 THE INFORMATION ITSELF) 31702. When might people living in the U.S. have been affected by I-131? During the 1950s 3171 and 1960s when the tests were conducted? Now, in the 1990s? In the future, when 3172 it’s 200 and beyond? 3173 3174You may or may not have a thorough understanding of thyroid cancer. To ensure that all of 3175us have the information we need to get through tonight’s discussion, I’d like to give you 3176some information about thyroid cancer. (SHOW BOARD) 3177 3178 Thyroid Cancer This type accounts for 1% of all cancers. 3180 Symptoms: 3181 Lump in the neck (most common)____________ 3182 Tight or full feeling in the neck______________ 3183 Difficulty breathing or swallowing ______________ (less common) 3184 Hoarseness______________________________ 3185 Swollen lymph nodes______________________ 3186 31873. Who do you perceive to be most at-risk for thyroid cancer based upon the risk factors 3188 presented in the article? Which factors are most central? 3189 3190 PROBE: Different geographical areas 131 I-105
    • 3191 Age 3192 Milk consumption 31944. Given the identified risk factors, how concerned are you that any of your current 3195 patients may be at risk of developing thyroid cancer? At the present time, there is no scientific evidence that the amount of I-131 exposure that people received from the Nevada Site is related to any other types of thyroid disease besides thyroid cancer. Research is being conducted to find out if the amount of I-131 exposure people received could be related to other thyroid disorders. Here are descriptions of SOME of the symptoms of two disorders that some people have claimed could be related to the I-131 exposure from the Nevada Test Site. (SHOW BOARD) Hypothyroidism A condition in which the thyroid gland becomes underactive. The thyroid gland is located in the neck and affects heart rate, blood pressure, body temperature, metabolism, and childhood growth and development. Symptoms: Lack of Energy, Tiredness Depression Feeling Cold Dry, Coarse, Itchy Skin Dry, Coarse, Thinning Hair Muscle Cramps Constipation Weight Gain Hyperparathyroidism A condition in which the parathyroid glands become overactive. The parathyroid glands are located next to the thyroid and affect the body’s supply of calcium. Symptoms: Calcium Deposits Osteoporosis or Loss of Bone Density Muscular Weakness Nervousness Irritability Racing Heart Increased Perspiration Thinning of Skin Fine, Brittle Hair Frequent Bowel Movements Weight Loss 132 I-106
    • 3197 31985. Do you believe these concerns about non-cancerous thyroid conditions are warranted 3199 by available information on I-131 and its effects on human health? Or are these 3200 concerns needlessly raised? 3201 32026. Additional research into the non-cancerous thyroid conditions due to I-131 exposure 3203 is being conducted. How worthwhile do you think this effort is? 3204 32057. How concerned are you about your patients’ risk of developing any of the non- 3206 cancerous thyroid disease I mentioned as a result of the Nevada tests? What makes 3207 you concerned? 3208 32098. In comparison to other types of health risks, how concerned are you about your 3210 patients’ risk for thyroid cancer as a result of I-131 exposure? Non-cancerous 3211 thyroid diseases? (DETERMINE WHETHER PARTICIPANTS ARE MORE 3212 CONCERNED ABOUT THYROID CANCER OR NON-CANCEROUS THYROID 3213 DISEASES) 32159. What other information would you need to make a good determination of whether 3216 you have patients that are at heightened risk for I-131 related problems? 3217 3218IV. EDUCATION CAMPAIGN (45 minutes) 3219 32201. What, if anything, do you think should be done to educate the public about I-131 and 3221 potential health risks? 3223 PROBE: Public education 3224 Screening 3225 Compensation for medical expenses (RESERVE ANY 3226 DISCUSSION AROUND ADDITIONAL TYPES OF 3227 COMPENSATION FOR SECTION V) 3228 32292. Who should be responsible for implementing these efforts? (IF GOVERNMENT: 3230 PROBE FOR LOCAL, STATE OR FEDERAL, IF FEDERAL PROBE FOR 3231 AGENCIES) What about these entities makes them responsible? 3233 In 1999, the Institute of Medicine (IOM), a panel of experts from the National Academy of 3234 Scientists congressionally mandated to advise the federal government on medical issues, 3235 released medical screening recommendations for people who may have been exposed to 3236 I-131 released from the Nevada Tests. The panel concluded that the available science 3237 does NOT warrant medical screening tests within the general population or within any 3238 subgroups of the population. 3239 3240 The reasoning behind this recommendation is that very few people get thyroid and those 3241 that do are very likely to be cured. In addition, the current method of thyroid cancer 3242 screening can produce false positives, meaning that people may be inaccurately 133 I-107
    • 3243 diagnosed with thyroid cancer and consequently subjected to unnecessary fear, 3244 medication and surgery. 3245 3246 For these reasons, the IOM felt that the evidence suggests that more harm than good to 3247 the public would be done with screening. 32483. What are your opinions about this recommendation? How important is it to educate 3249 the public about I-131 and the potential health risks? 3250 32514. In your opinion, who needs to be informed about the possible risks associated with 3252 the I-131 emitted from the nuclear tests? Should everyone in the U.S. be the focus, 3253 or should information be targeted to those who may have been more exposed? Why? 3254 32555. IF GENERAL PUBLIC: What information do you think the general public needs to 3256 get? 3257 3258 IF THOSE MORE EXPOSED: What information do you think people who were 3259 heavily exposed need to get? 3260 32616. What role, if any, should physicians play in a campaign to educate the public about 3262 I-131 health implications? 32647. Based on what you know now, is it important for you to inform your patients? Why 3265 or why not? 32678. What barriers might you encounter? What support might you need? 3268 3269 PROBE: Time 3270 Money 3271 Tips on how to talk to patients 3272 Materials (What types?) 3273 Further information 32759. What other types of health care professionals should be involved in an educational 3276 effort? 327810. If an educational effort is to be launched, some organization or organizations need to 3279 be responsible for implementing the effort. What organizations or types of 3280 organizations would you particularly trust to implement these efforts? What about 3281 those organizations makes you trust them? 3282 3283 PROBE: Government agencies 3284 Non-profit organizations 3285 Advocacy groups 3286 Medical associations 3287 134 I-108
    • 328811. What organizations or types of organizations should NOT be involved in 3289 implementing these efforts? What makes them untrustworthy? 3290 329112. How much do you think people will trust a public education campaign that is 3292 conducted by the federal government? What specific federal agencies should be 3293 involved? Why? 3294 3295V. ADDITIONAL CONSIDERATIONS (5 minutes) 3296 3297 In your opinion, what are the main reasons why the public should be informed about the 1. 3298 Nevada Test Site, I-131 exposure, and any potential health problems? 3299 3300 IF NECESSARY, PROBE: Some people think the government has an obligation to 3301 let people know about the exposure from the Nevada 3302 Test Site primarily because some people could have 3303 been harmed by the fallout. Other people think that 3304 regardless of the level of harm people experienced the 3305 government has an obligation to inform the public 3306 because the public has a right to know about its 3307 government’s actions. Which of these best represents 3308 your views? Why? 3309 3310 Based on everything you know now, what if anything, would justify the Nevada atomic 2. 3311 bomb testing? 3312 3313 IF NECESSARY, PROBE: People were exposed to radioactive material while 3314 nuclear weapons were being tested for the purpose of 3315 defending our country. What do you think about this? 3316 33173. Do you think the government would have intentionally exposed people to radioactive 3318 material or do you think the government probably didn’t know about the negative health 3319 effects that may be associated with the exposures until after the tests were already 3320 conducted? 3321 33224. What else do you think needs to be done to address the issue of I-131 fallout from the 3323 Nevada Test Site that we have not talked about? 3324 3325VI. CLOSING (5 minutes) 3326 33271. CHECK WITH OBSERVERS FOR ADDITIONAL QUESTIONS. 33292. Those are all of the questions I have. Do you have any final comments? 33313. Thanks for your participation today. I have some bookmarks that can provide you with 3332 current information about what we’ve discussed this evening. Feel free to take one 3333 before you leave. 135 I-109
    • 3334 136 I-110
    • 3335Additional Facts 3336 3337 • Thyroid cancer accounts for 1% of all cancers. 3338 3339 • Some areas near the Nevada Test Site were highly exposed to I-131 radiation. Other 3340 areas farther from Nevada also were highly exposed because weather patterns carried 3341 the radiation north and east of Nevada. 3342 3343 3344Study Estimating Thyroid Doses of I-131 Received by Americans from Nevada 3345Atmospheric Nuclear Bomb Tests 3346 3347Figure 1 3348Per capita thyroid doses resulting from all exposure routes from all tests 3349 137 I-111
    • 3350 3351 I.6 Tools for Research 3352(see next page) 3353 138 I-112
    • 3354Table I.6.1 “Tools” typically utilized for communications planning research. Research Method Description Pros Cons Common Uses Surveys/Questionnaires Questionnaires or survey (self-administered) forms are filled out by the respondents themselves. Clarity in question design and instructions for completion are important. By mail Questionnaires or survey • Generalizable results (if • Not appropriate for • Obtain baseline data forms are sent to potential sufficiently large, probability respondents who cannot read • Acquire self-reported subjects for them to complete sample with high response or write information on behaviors, on their own time and mail rate) • Low response rate behavioral intentions, back to researcher. • Can be anonymous diminishes value of results. attitudes (especially useful for highly May require follow-up by • Determine message’s reach, sensitive topics) mail or telephone to increase attention-getting ability • Respondents can answer response rate (increases total • Test knowledge, questions when most costs). comprehension convenient for them • Respondents may return • Can collect both program incomplete questionnaires data and personal data (e.g., • Limited ability to probe participant characteristics) answers • Does not require staff time • Respondents may self- to interact with target select (potential bias) population • May take long time to • Can be used to access receive sufficient numbers of difficult-to-reach populations responses (e.g., the homebound, rural • Does not yield reliable populations) assessments of attention- • Can incorporate visual getting ability or recall of material (e.g., can pre-test message prototype materials) • Postage may be very expensive if sample is large 139 I-113
    • Research Method Description Pros Cons Common Uses By handout Respondents are asked to • Can more readily improve • Not appropriate for • Obtain baseline data complete survey at a location response rate because there is respondents who cannot read • Acquire self-reported frequented by the target an opportunity to use face-to- or write information on behaviors, population (e.g., during a face persuasion tactics • Must be able to reach behavioral intentions, conference, in a classroom, • Can collect both program respondents in person at a attitudes after viewing an exhibit at a data and personal data (e.g., central location or a • Test knowledge, health fair). participant characteristics) gathering comprehension By Computerized Self- A questionnaire is • Useful for complex • Not appropriate for • Test knowledge, administered Questionnaires programmed and displayed questionnaires because audiences who cannot read comprehension (CSAQ) on a computer screen with complex “skip patterns” can or those unfamiliar or • Acquire self-reported respondents keying in their be preprogrammed uncomfortable with information on behaviors, answers. Requires that • Can control sequencing of computers behavioral intentions, respondents have access to questions • Requires expensive attitudes programmed computers and • Can provide quick technical equipment that may • Pre-test visual material that they be somewhat summary and/or analysis of not be readily available or • Determine if audience familiar and comfortable results by eliminating the may be cumbersome in many attends to, comprehends, and with using computers. step of data entry from paper settings remembers contents of questionnaires or interviews message. Surveys/Questionnaires A trained interviewer asks (administered by survey questions of interviewer) respondents. Allows respondent to ask for clarification and allows interviewer to control question sequence. 140 I-114
    • Research Method Description Pros Cons Common Uses By telephone Respondents are contacted • Generalizable results (if • Requires interviewer • Obtain baseline data via telephone by trained sufficiently large, probability training • Determine message’s reach, interviewer. Respondents sample with high response • Low response rate attention-getting ability may be selected in advance rate) diminishes value of results • Acquire self-reported from a list or contacted • Appropriate for those of • Potential respondents who information on behaviors, randomly (increases lower literacy do not have a phone cannot behavioral intentions, generalizability of results). • Interviewer available to participate attitudes clarify questions for • Respondents often hang up • Test knowledge, respondent and probe if they believe the survey is comprehension. answers part of a solicitation call • Decreased likelihood of incomplete questionnaires By computer-assisted Respondents are contacted • Generalizable results (if • Considerable development • Obtain baseline data telephone interviewing via telephone by a trained sufficiently large, probability work and lead time are • Test knowledge and (CATI) technology interviewer who has the sample with high response needed before survey comprehension questionnaire displayed on a rate) implementation • Obtain self-reported computer terminal. The • Can program allowable • Requires much interviewer information regarding interviewer enters data codes for responses which training attitudes and behaviors. directly into the computer. interviewer can use to correct • Not useful for small mistakes during interview samples because the • Can program help menus to workload costs of CATI assist interviewer exceed the benefits • Computer controls question sequence, allowing complex “skip patterns” • Provides a more efficient means of generating a probability sample 141 I-115
    • Research Method Description Pros Cons Common Uses Face-to-face One-on-one, in-person • Generalizable results (if • Can be more labor • Obtain baseline data interview is used to collect sufficiently large, probability intensive than self- • Determine message’s reach, information on knowledge, sample with high response administered or telephone attention-getting ability attitudes, and/or behaviors. rate) data collection • Acquire self-reported • Appropriate for those of • Less appropriate for information on behaviors, lower literacy sensitive or threatening behavioral intentions, • Useful with difficult-to- questions (respondents may attitudes reach populations (e.g., not answer truthfully in • Test knowledge, homeless, low-literacy) or person) comprehension when target audience cannot be sampled using other data collection methods • Interviewer available to clarify questions for respondent and probe answers • Decreased likelihood of incomplete questionnaires Central location intercept Potential respondents are • Can connect with harder- • Requires interviewer • Test program messages, interviews approached in a public area to-reach respondents in training materials by a trained interviewer and locations convenient and • Quota sample, not invited to participate in the comfortable for them probability sample survey. Usually conducted in • Can be conducted quickly • Not appropriate for a high-traffic area (e.g., mall, • Cost-effective means of sensitive issues or potentially student union) or other area gathering data in relatively threatening questions frequented by target short time • Cannot easily probe for population. Requires highly • Increased number of additional information (too structured, pre-determined respondents within intended time consuming) questions that primarily use population if appropriate multiple-choice or close- location chosen ended questions. • Larger sample size than focus groups • Eliminates group bias that is possible in focus groups 142 I-116
    • Research Method Description Pros Cons Common Uses Written responses to requests Information is requested in a • Can allow respondents • Requires considerable • Track program for information (e.g., diaries, specific format from more flexibility in their effort on respondents’ parts implementation activity logs, anecdotal individuals implementing a replies • Incoming data may be • Learn what questions accounts) program or from participants • Can enable researchers to voluminous and challenging program participants had themselves. Information may receive reports on behavior to code and compare • Learn what technical relate to such issues as over time, rather than a • Not appropriate for assistance was needed by quality of program “snapshot” respondents who have poor program staff components or how writing components are used by target population. Review of existing data (e.g., A structured evaluation of • Use of existing data means • Diminished ability to • Conduct needs assessment program registration rolls, information previously less effort in data collection control data points and data • Track the number of people grocery store receipt tapes, collected by local, state, or • May be inexpensive if collection methods engaging in a behavior in a hospital discharge records) national agencies is owner of data provides them given locale (e.g., accessing undertaken. Existing sources at little or no cost free mammography screening of health data (statistics, • Possible sources of data are services, purchasing tracking records, treatment plentiful sunscreen). patterns) may be available on the World Wide Web or through government agencies, local or university libraries, health departments, clinics or hospitals, police departments, schools, research or nonprofit organizations. Organizations may collect data not originally intended as health data, but useful nonetheless. Examples include grocery store receipts and event attendance records. Analysis of existing data is useful for all forms of evaluation 143 I-117
    • Research Method Description Pros Cons Common Uses In-depth personal interviews Qualitative data collection • Can explore long or • Time consuming • Develop concepts or method involves less rigid complex draft materials • Requires level of trust messages question structure and • Can be effective with those between interviewer and • Test long or complex draft interviewing style than of lower literacy respondent, especially when materials quantitative methods. • Allows considerable dealing with sensitive or • Conduct a needs opportunity to probe answers threatening material assessment. • Allows for intensive • Interviewer must be highly investigation of individual skilled in active listening, thought, opinions, and probing, and other attitudes interviewing skills • Interviewer must be knowledgeable about and sensitive to a respondent’s culture or frame of reference Focus groups This tool is a qualitative method of data collection wherein a skilled moderator facilitates discussion on a selected topic among 6 to 10 respondents, allowing them to respond spontaneously to the issues raised. Lasts for 60 to 90 minutes per session. For focus group research to be most valuable, the moderator must cover the research topics, establish an environment in which all points of view are welcome, and follow up on unexpected but potentially valuable topics that are raised. 144 I-118
    • Research Method Description Pros Cons Common Uses Face-to-face When focus groups are • Interaction in the group can • Findings not generalizable • Explore complex topics conducted in person, help elicit in-depth thought • Respondents may be with target audience prior to participants and the and discussion concerned about lack of program (e.g., what moderator gather, usually • Considerable opportunity anonymity helps/hinders healthy eating) around a table. Observers to probe answers • Can be labor intensive and • Learn about feelings, (members of the research • Can yield richer data than expensive, especially if motivators, past experiences team) sit behind a one-way surveys about the groups are conducted in related to a health topic mirror or unobtrusively back complexities of audience’s multiple locations • Test concepts, message, from the table and take notes. thinking and behavior materials, and artwork Groups may also be recorded • In-person groups give • Can generate and test by audio- or videotape. moderator more opportunity hypotheses. to read nonverbal cues and use nonverbal cues to control the flow of discussion than in telephone focus groups • Rapport can be fostered more easily among in-person groups than telephone groups 145 I-119
    • Research Method Description Pros Cons Common Uses By telephone When focus groups are • Interaction in group can • Findings not generalizable • Explore complex topics conducted by telephone, the help elicit in-depth thought • Respondents may be with target audience prior to moderator and participants and discussion concerned about lack of program (e.g., what speak by conference call • Considerable opportunity anonymity helps/hinders healthy eating) with observers listening and to probe answers • Telephone groups tend to • Learn about feelings, taking notes. Telephone • Can yield richer data than work best when participants motivators, past experiences groups may be recorded by surveys about the have tangible materials to related to a health topic audiotape. Typically, 6 to 8 complexities of audience’s which they can respond (e.g., • Test concepts, message, people participate. thinking and behavior pre-testing materials). materials, and artwork • Telephone focus groups • Long distance phone bills • Generate and test can be more easily convened for groups can be expensive, hypotheses. than in-person groups when especially if many people participants’ listen in occupations/lifestyles afford • Productive sessions by little free time (e.g., doctors, phone cannot usually be mayors); reduce travel sustained more than 1 to 1½ burden on research staff; and hours can allow for broad geographic representation • Allow for project staff and partners to listen from their homes or offices 146 I-120
    • Research Method Description Pros Cons Common Uses Theater testing Quantitative data is collected • Can gather quantitative • Significant production • Test audiovisual materials from a large group of data from large group at once costs associated with making with many respondents at respondents (generally 60- • Data available immediately draft materials available to once 100 people per session) who • Showing “actual” test respond to audio-visual audiovisual materials allows • Limited ability to ask open- materials (e.g., commercials, more realism than ended questions PSAs). Some messages storyboards • Rely on technological shown are controls and • Using control messages equipment that may not be others are being tested, allows more realism readily accessible allowing for a more “real life” assessment of message concepts. Respondents answer questionnaires or respond electronically means. Observational studies Individuals are observed in a • Can observe behaviors or • Can be labor intensive; • Counting people accessing natural setting with minimal program implementation requires site visits a service observer interaction (e.g., directly • Many behaviors and • Assessing the consistency observing shoppers in a program activities not easily with which a service is grocery store to see if they observed delivered (e.g., whether are reading posted nutritional • Presence of observer can registration desk clerks charts) alter behavior of those being mention a program to all observed potential participants) • Ethics of observing people • Observing whether skills without their knowledge may (e.g., testing blood sugar) be questioned have been learned correctly • Useful for observing behavior at baseline, during a program, and after it ends. 147 I-121
    • Research Method Description Pros Cons Common Uses Readability testing Estimates the educational • Inexpensive • “Rule of thumb” only, not • Increase likelihood that level required for target • Test can be performed very predictive of readers’ ability materials will be population to adequately quickly to understand content comprehensible for those comprehend written • Must be interpreted with with lower literacy levels materials (i.e., if a caution because many pamphlet’s readability level additional factors can is sixth grade, readers need enhance or diminish to read at about the sixth comprehension of written grade level in order to material (e.g., the conceptual comprehend the pamphlet.. context of the material, Readability tests are reader’s motivation or available on many standard interest in the material, word processing packages or layout of concepts in a a test can easily be computed passage, use of graphics and by hand. symbols) Expert review An analysis of program • Inexpensive • Risk of experts seeking to • Obtain input prior to material or approaches is • Can help obtain support or take over or radically change program design from experts performed by individuals “buy in” for your program program plans in a health field or who have who are particularly • Can be challenging to experience working with knowledgeable in a content reconcile differing your target audience area. Reviewers may check viewpoints • Ensure that your messages such issues as scientific and are scientifically accurate technical accuracy or cultural • Test program materials appropriateness. Reviewers (e.g., ensure materials are may be individuals such as culturally appropriate). medical research scientists, social workers, law enforcement officials, teachers, or community leaders. 148 I-122
    • Research Method Description Pros Cons Common Uses Gatekeeper Review The appropriateness of draft • Inexpensive • Can cause setbacks if major • Ensure that messages will program material for a target • Can help obtain support or revisions are needed (project be disseminated and program audience is assessed by “buy in” for your program staff can plan ahead and use plans carried out by obtaining individuals who can • Can ensure and smooth formative research to avoid gatekeeper approval prior to facilitate, complicate, or access to target populations this) program dissemination deny access to target • Obtaining cooperation and • Obtain “buy in” from population (e.g., those who getting priority attention can influential people who control distribution be challenging if gatekeepers control distribution channels channels). Gatekeeper are not especially invested in • Ensure that products commitment may be the population conform to gatekeeper necessary to ensure that a agency policies and goals program will be implemented (e.g., television station as planned. regulations for PSAs) Media tracking Content communicated by • Allows tracking of media • Review of data is time • Conduct needs assessment (print, audio, or audiovisual mass media outlets (e.g., that can be influential for the consuming • Track changes in media media) television, radio, billboard target audience • May require training of treatment of a topic in advertisements) is tracked • Allows health readers or video viewers if response to an event or and analyzed systematically. communicators to better automated tracking is not program A professional service understand patterns of media used • Identify issues addressed by typically is hired to do the attention given their topic • Print and video clipping media channels that focus on tracking if the range of media services are expensive program’s target audience sources extends much • Discern whether media beyond the local level. outlets are disseminating program messages as hoped or planned Source: CDCynergy: Your health communication planning and evaluation tool. Version 1.0. Centers for Disease Control and Prevention; Office of Communication. July 1998. 3355 I.7 NCI’s 131I/NTS Communications Campaign 3356 and Process Evaluation Plan 3357 149 I-123
    • 3358 I.7.1 NCI’s 131I/NTS Communications Campaign 3359 3360The goals of NCI’s 131I/NTS Communications Campaign were: 3361 3362To inform health care providers (via health provider organizations) who conduct thyroid screening and education about the 3363availability of NCI’s I-131 materials, especially those practicing in significant fallout areas 3364 3365To inform consumer organizations that focus on health education needs of people ages 40 and older, with particular emphasis on 3366groups responsible for thyroid education, about the availability of NCI’s I-131 materials 3367 3368To inform federal agencies about the availability of NCI’s I-131 materials for incorporation into their communication channels 3369 3370To make information about I-131 materials easily accessible for use by interested consumers, the public at large and advocacy 3371organizations for inclusion in their communication channels 3372 3373In December 2002, the NCI released communication materials for the Project, developed with extensive input from advocacy 3374groups, community representatives and health officials, as well as extensive focus group testing. Materials included: 3375 3376  Get the Facts About Exposure to I-131 Radiation--This general information brochure provides 3377 information about the Nevada tests and identifies individuals at particular risk. 3378  Making Choices: Screening for Thyroid Disease-- This decision aid workbook/brochure is for individuals 3379 concerned about their exposure to I-131 from fallout (Based on decision support format of the Ottawa Health 3380 Decision Center at the University of Ottawa and Ottawa Health Research Institute, Ontario, Canada) 3381  Radioactive Iodine (I-131) and Thyroid Cancer--This flip chart, designed for use in small groups of up 3382 to 10 people, addresses concerns specific to Native Americans. 3383  I-131 Web Site (www.cancer.gov/i131), which includes tools for partners (“swiss cheese” press release, 3384 promotional brochure, etc.) 150 I-124
    • 3385In order to accomplish these goals, by June 2003, NCI had accomplished the following 3386 3387  Held a national teleconference (Dec 2002), at which NCI staff and invited experts discussed pertinent I-131 issues and 3388 plans for public promotion and dissemination of the materials 3389  Disseminated materials to project partners 3390  Within key exposure areas8, disseminated materials through email and US postal service. Efforts concentrated on reaching 3391 key intermediaries-- health provider associations, community health clinics, advocacy and support groups, community- 3392 based networks, state health agencies, schools of public health, social workers, and federal agencies (including local 3393 clinics of the Indian Health Service.) (Full list follows). These intermediaries were provided tools to reach secondary 3394 audiences, which include individual health care providers and the concerned public aged 40 and older, particularly those 3395 who lived in areas of highest exposure and who consumed milk during the testing period. 3396  Conducted follow up calls to key organizations to ascertain interest in additional activities 3397 3398In sum, the NCI conducted direct outreach with over 1000 local, regional and national organizations (see attached list). 3399 3400 I.7.2 NCI’s 131I/NTS Process Evaluation Plan 3401 3402In evaluating the promotion and dissemination efforts of the NCI’s 131I/NTS Communications Campaign, the NCI developed the 3403following measurable objectives: 3404 1. By January 31, 2003, NCI will send promotional materials and educational products to all organizations on the original 3405 recruitment list. 3406 2. By January 31, 2003, NCI will send promotional materials and educational products to health professional, consumer 3407 health, advocacy, and federal organizations identified by key stakeholders9. 3408 3. NCI will send promotional materials to 100% of organizations who request information on the educational products. 1518 Twenty states received the highest fallout and include: Montana, Nevada, Utah, Colorado, North Dakota, South Dakota, Nebraska, Kansas, Oklahoma, 152Missouri, Arkansas, Minnesota, Iowa, Wisconsin, Illinois, Wyoming, Idaho, Indiana, Texas and Vermont. There are 7 states (Massachusetts, Tennessee, 153New York, Oregon, Ohio, Michigan and Louisiana) in which only a few counties within each state were affected. 154 1559 Group of key informants representing health professional, consumer health, advocacy and federal organization who are interested in I-131 issues and who 156were identified by NCI at the project’s inception. Largely consists of members of NCI’s I-131 listserv. 157 I-125
    • 3409 4. By December 31, 2002, NCI will conduct a teleconference to launch the materials with the media and key 3410 stakeholders. 3411 5. By February 3, 2003, NCI will send I-131 promotional materials to 100% of specified NIH and NCI-affiliated groups 3412 6. By February 10, 2003, NCI will send I-131 promotional materials and educational products to 100% of specified core 3413 thyroid health groups 3414 7. By February 17, 2003, NCI will send I-131 promotional materials and educational products to 100% of specified 3415 general medical societies and primary care institutions 3416 8. By February 27, 2003, NCI will send I-131 promotional materials and educational products to 100% of specified 3417 consumer health organizations 3418 9. By February 21, 2003, NCI will send I I-131 promotional materials and educational products to 100% of specified 3419 Federal agencies (see Appendix B. Promotion Plan). 3420 10. By July 3, 2003, NCI will follow-up with 100% of specified core thyroid health specific groups 3421A Process Evaluation Template, which includes evaluation questions, indicators, measures, process objectives, data sources, and 3422frequency of data collection was developed. Data is to be analyzed in 2003. 3423 158 I-126
    • 3424This list represents over 450 national organizations/groups who received I-131 promotional materials disseminated by the 3425Office of Cancer Communications in December 2002 [in addition to 121 Members of Congress]. 3426 3427AARP 3464Mallinckrodt Institute of Radiology-Washington University School of 3428Agency for Toxic Substances and Disease Registry 3465 Medicine 3429Alliance for Nuclear Accountability 3466Mayo Medical School-Mayo Clinic Rochester 3430Alliance of Atomic Veterans 3467Memorial Sloan-Kettering Cancer Center 3431American College of Preventive Medicine 3468Miamisburg Environmental Safety and Health 3432American Thyroid Association (1000) 3469Migrant Clinicians Network 3433Association of State and Territorial Health Officials 3470Migrant Head Start Quality Improvement Center 3434ATSDR (1000) 3471Morgan County Medical Center 3435Baltimore City Department of Health 3472Morgan County Medical Center 3436Center for American Indian Research and Education 3473NAACP-Oak Ridge, TN 3437Center for Global Security & Health, Physicians for Social 3474National Association of County and City Health Officials 3438 Responsibility 3475National Association of Radiation Survivors 3439CDC: State Radiation Directors (54) 3476National Center for Environmental Health 3440CDC: Division of Health Communication-Childhood Cancer Research 3477National Center for Farmworker Health 3441 Institute and Clark University 3478National Committee for Radiation Victims 3442Colorado Department of Public Health and Environment 3479National Congress of American Indians 3443Conference of Radiation Control Program Directors 3480National Institute of Diabetes and Digestive and Kidney Diseases 3444Consumers Union 3481National Medical Association 3445Council of State and Territorial Epidemiologists 3482Natural Resources Defense Council 3446Decision Research 3483Navaho Uranium Radiation Victims Committee 3447US Department of Health and Human Services 3484Directors Consumer Liaison Group-National Cancer Institute 3448Vanderbilt University-Department of Radiology 3485Nevada State Health Division 3449Dine Care Group 3486New England Journal of Medicine 3450Downwinders, Inc. 3487New York Presbyterian Hospital- Weill Medical College of Cornell 3451Elder Voices, Inc. 3488 University 3452Hanford Health Information Network Resource Center 3489New York State Department of Health 3453HRSA: radiation education grantees (36) 3490Nuclear Information & Resource Service 3454HRSA: Bureau of Primary Health Care: Primary and community health 3491Oak Ridge Environmental Justice Committee 3455 centers in high-exposed counties (390) 3492Oregon Department of Human Services 3456Idaho Division of Health 3493Oregon Health Division Environmental and Occupational Epidemiology 3457Indigenous Environmental Network 3494Pew Environmental Health Commission 3458Institute for Energy and Environmental Research 3495Physicians for Social Responsibility 3459Institute for Energy and Environmental Research 3496Porter Novelli 3460Interpretive Consultations, Inc, Risk Communication and Environmental 3497Public Interest Research Group- United States 3461 Education 3498Radiation and Public Health Project 3462Iowa Dept. of Public Health 3499Radiation Health Effects Archives 3463Johns Hopkins University School of Hygiene and Public Health 3500Radiological Health Section, Nevada State Health Division 159 I-127
    • 3501Redish & Associates, Inc. 3514The National Academies 3502Rutgers University 3515Thyroid Disease Information Source 3503Scarboro Community Environmental Justice Council 3516Tufts University, Editor in Chief, Medicine and Global Survival 3504SENES Oak Ridge, Inc. 3517U.S. Department of Health and Human Services 3505Short Cressman & Burgess PLLC 3518University of Colorado School of Medicine 3506Sinai Hospital of Baltimore 3519University of North Carolina at Chapel Hill School of Public Health 3507Sisters of Charity of Ottawa Health Services 3520UPMC News Bureau 3508Snake River Alliance 3521Uranium Education Program 3509Social and Environmental Research Institute 3522Utah Department of Health, Bureau of Epidemiology 3510Standing for the Truth About Radiation 3523Vanchieri Communications 3511Support and Education for Radiation Victims 3524Western States Legal Foundation 3512Tennessee Department of Environment and Conservation 3525Women's Action for New Directions 3513The Endocrine Society 3526World Health Organization-Regional Office for Europe 3527 3528 160 I-128
    • 3529This list represents over 200 national organizations/groups and their affiliates or chapters who received I-131 promotional 3530materials disseminated by the Office Education and Special Initiatives in Spring 2003. 3531 3532Alaska Native Tribal Health Consortium 3555National Association of Community Health Centers (20 risk states) 3533American Academy of Family Physicians (chapter heads in 20 states) 3556National Association of County and City Health Officials 3534American Academy of Nurse Practitioners 3557National Association of Social Workers 3535American Academy of Physician Assistants 3558National Association of State Directors of Migrant Education 3536American Association of Cancer Education 3559National Black Nurses Association 3537American Association of Retired Persons (local chapters and 3560National Center for Farmworker Health 3538 clearinghouse) 3561National Council of La Raza 3539American Board of Internal Medicine 3562National Hispanic Medical Association 3540American Cancer Society (divisional offices) 3563National Hispanic Nurses Association 3541American College of Obstetricians and Gynecologists 3564National Indian Health Board 3542American College of Preventative Medicine 3565National Medical Association (local and state societies) 3543American Indian Institute 3566National Rural Health Association 3544American Medical Association 3567Native American Cancer Initiative 3545American Nurses Association (state/local chapters in priority regions) 3568Native American Health Issues 3546American Public Health Association 3569Office of Minority Health (HHS clearinghouse) 3547Association of American Indian Physicians 3570Office of Minority Health Affairs 3548Association of Community Cancer Centers 3571Older Women’s League 3549Center for Medicaid and Medicare Services 3572Oncology Nursing Society – Special interest committees: Cancer 3550Centers for Disease Control and Prevention 3573 Program Development, Management: Patient Education and 3551Chronic Disease Directors (communications committee) 3574 Prevention, Early Detection Special Interest Groups 3552Environmental Protection Agency (American Indian Environmental 3575Thyroid Cancer Survivors’ Association (local chapters) 3553 Office) 3576Veterans Administration 3554Indian Health Service (American Indian Environmental Office) 3577 161 I-129