Your SlideShare is downloading. ×
Minority Inclusion in Research: Lessons Learned and Questions to ...
Upcoming SlideShare
Loading in...5

Thanks for flagging this SlideShare!

Oops! An error has occurred.

Saving this for later? Get the SlideShare app to save on your phone or tablet. Read anywhere, anytime – even offline.
Text the download link to your phone
Standard text messaging rates apply

Minority Inclusion in Research: Lessons Learned and Questions to ...


Published on

  • Be the first to comment

  • Be the first to like this

No Downloads
Total Views
On Slideshare
From Embeds
Number of Embeds
Embeds 0
No embeds

Report content
Flagged as inappropriate Flag as inappropriate
Flag as inappropriate

Select your reason for flagging this presentation as inappropriate.

No notes for slide
  • Thank you so much for inviting me to speak with you today.
    Role at HPDP – promoting the use of CBPR.
    Delighted to have this opportunity to speaks with representatives from Region 4 Health Departments.
  • Federal guidelines have mandated the inclusion of minorities in clinical research in an effort to better understand disparities in health and to improve the generalizability of research findings,.
    However there is concern that distrust of research and the medical community will impede successful recruitment of African Americans.
  • AHRQ commissioned a systematic review of existing evidence on recruitment of underrepresented populations into cancer clinical trials.
    Investigators focused on six key questions related to recruitment. Question number five asks, What are the documented barriers and promoters of participation for underrepresented populations in cancer prevention and treatment trials? This question has two sub-questions: 5a. Do these barriers and promoters differ by age, gender, socioeconomic status or race/ethnicity? 5b. Are these barriers and promoters modified by cultural factors?
    Identified 118 distinct barriers to participation and 59 distinct promoters
    Focused on barriers and promoters to awareness, opportunity, and acceptance
    Study participants reported more barriers and promoters related to opportunity than to awareness or acceptance
    The barriers listed here represent the most frequently reported.
  • Distrust among African Americans is thought to stem from the history of racial discrimination and exploitation in the United States.
    The US Public Health Service Study at Tuskegee has come to symbolize ethical misconduct in the context of clinical research.
    However, distrust in medicine and research in fact may be rooted in experiences extending back to slavery through to the present day.
  • In an effort to understand the claims that racial and ethnic minorities are less willing than non-Hispanic whites to participate in health research, Wendler et at performed a comprehensive literature search of published health research studies that reported consent rates by race or ethnicity. They found 20 reports that did this. The studies represent a broad range of research, including interviews as well as clinical and surgical trials. Together, they report the enrollment decisions of over 70,000 individuals. Eighteen of the 20 studies were single-site studies conducted exclusively in the United States. The researchers found very small differences (in most cases non-statistically significant differences) in the consent rates of minorities, mostly African Americans and Hispanics, compared to non-Hispanic whites. This suggests that minorities are as willing to participate in research studies and underrepresentation of minorities may have more to do with characteristics of the study rather than racial/ethnic identity of the participants. For instance, researchers found significant differences by race/ethnicity in the number of individuals invited to participate (seven of the 17 clinical and surgical trials offered enrollment to few individuals from minority groups, especially considering the percentage of the population composed and the incidence of the disease being studied. P.207)
    Bullet Two: For these ten clinical interventions, the consent rates for African Americans versus non-Hispanic whites was 45.3% vs 41.8, which was not a statistically significant difference. For these studies, Hispanics had statistically significant higher consent rates compared to non-Hispanic whites (55.9% vs 41.8%).
    Bullet Three: For these seven surgical intervention studies, all minority groups were categorized together. Minorities as a group had non-significantly higher consent rates than non-Hispanic whites (65.8% vs 47.8%).
  • Why is CBPR useful?
    Please note, I have included useful sources on some of the slides and a resource section at the end
    Complex health and social problems
    Community members bring own “expertise” to the table
    Funder demands
    Like the opportunity before you
    Disappointing results in intervention research
    Interventions shaped by “outside experts” may not take into account the unique contexts of communities, may not ask the “right questions” or even know which questions to ask
    Increasing understanding of importance of local and cultural context
    Increasing interest in use of research to improve best practices/best process
    An interative approach, suitable to
  • Kellogg Health Scholars Program, a CBPR post doc training program, long-time expertise in partnering with communities to tackle health disparities. Tremendous expertise . . .
    Remembers this definition as we continue and look at examples later in the webinar
  • CBPR is an orientation, an approach, a process
    Not methods, can use a whole variety of methods, as long as involve partners in all aspects of research
    Ongoing mutual learning
    Equitable contributions of expertise
    Shared responsibility and ownership
  • This speaks to CBPR as focused on Academic – Community partnerships, I realize this might not be a component of your projects, but useful for thinking about CBPR and perspective communities (and academics) may bring to the process.
    CBPR more and more accepted.
    Community wary of “research”
    Academia wary of community participation
    Dynamic has changed over time.
  • Here is a more detailed look at CBPR.
    CBPR represented on top.
    Traditional research approach on bottom.
    Stages of research process (again, more than the process you will engage in, but useful to think about)
  • So, given all this background, what are the principles that define CBPR?
    What do we mean by “community of identity”? Different definitions of community – community as unit of identity means a community defined by a sense of identification with an emotional connection to others – (could be a neighborhood, could be a particular group of which a member – gay men) CBPR partnerships identify and work with communities of identity
    2) Builds on strengths and resources – really tries to identify assets with in communities of identity such as individual skills, social networks, organizations to address identified concerns
    3) Equitable partnership, also recognizes different expertise . . . And inequalities (in resrouces or the like) Builds relationships through mutual trust and respect and mechanisms for sharing . . . . . Just finished writing a proposal myself in the CBPR way – six months of meeting, assessing, planning, culminating, incorporating, putting together a budget, writing collaboratively . . .
    No doubt that there is conflict and compromise involved in process – what one of our community partners calls “necessary conflict”
  • Fosters co- learning
    Mutual learning as an ongoing process
    Seeks balance between research and action
    For the purposes of your work in this funding opportunity, seems like the CBPR process will involve collaborative planning for action strategy to benefit the community
    Local relevance – pays attention to individuals in their immediate context
  • CBPR – partners involved in sharing results – Academic terms – co-authoring journals, co-presenting at conference
    Think about how the partners involved in your projects can share results
  • You are writing a proposal to engage community members in designing an initiative to reduce gonorrhea health disparities. What are some ways you can go about involving community members in the process? Increase awareness of issues?
    Establish a Community Advisory Group – representing diverse interests – (talk about this later
    Other tools and approaches . . ..
    Focus groups – very effective
    Interviews with formal and informal leaders – “Regular Folks” -- Natural helpers – those people go to for help
    Community Capacity Inventory – (vs. community needs assessment – different frame) -- gathering data from former approaches . . . Surveys etc.
    Community Asset Maps – similar process involve community members in mapping their local resources – first individual, then develop map that represents collective views of community strengths
    Map social networks
    Risk mapping – where community members identify hazards in a particular setting , discuss risks, and decide what they want to address
    Community Dialogues
    See your Funding Opportunity lists Community Meetings as a strategy for community engagement in this process -- National Coalition for Healthier Cities and Communities/National Civic League – useful process – for larger community dialogues
    Photovoice – a community-based participatory research (CBPR) method that puts cameras into the hands of community members to explore issues and questions important to them. Developed by public health researcher Caroline Wang, the photovoice process enables people to reflect on their communities’ strengths and concerns, promotes dialogue and new knowledge through discussion of the photographs, and mobilizes action by reaching out to influential advocates through exhibitions and public forums. Photovoice is a useful tool for bringing the voices and perspectives of community members to the table and for shaping research according to the concerns and questions of the community.
    Focus in CBPR on Who gets to the Table and – next slide --
  • Project GRACE: Building and sustaining effective CBPR partnerships to address HIV disparities.
  • Brief description of how Project GRACE got started. The National Institutes for Health put out a request for applications from the National Center for Minority Health and Health Disparities. The RFA required the work to be CBPR, with a goal to reduce or eliminate health disparities. The RFA was for a 3 year grant, where the first two years needed to be a needs assessment, and the last year needed to be a pilot intervention.
  • We used a staged approach to partnership development that Florin and colleagues describe in their 1993 article. Initial mobilization involves the organizing entity recruiting participants who represent a wide spectrum of individuals, agencies, organizations, and community leaders. During the second stage, the focus is on establishing an organizational structure that reflects the principals of CBPR. The third stage involves enhancing the skills and tools of partners, and increasing the linkages between organizations outside the core group. Stage four focuses on identifying community needs and assets, refining goals and objectives, choosing strategies for implementing interventions, and planning their implementation.
  • The researchers had already built relationships with some agencies and community based organizations in the area of interest, and we began by reaching out to these folks, who drew in more community based organizations, agencies and individuals. Community meetings were set up to discuss the funding opportunity and the approach we wanted to take. During this stage, there were three open meetings with CBOs and interested individuals.
    During the meetings, writing teams were formed to work on the different components of the grant application. Each team contained academic researchers and community members. Decisions about the aims of the project and the proposed research methods were made as a group. The group decided to work on the prevention of HIV among African Americans.
    Once the application was drafted, an additional meeting was held to present the proposal to the community for approval. Interesting point:. The Principal Investigator had a detailed power point presentation planned to show to the community. However, rep from community stated “we need for the group to feel this” so he asked if he could show a video that he uses for his WiseGuy group. The video was short but very moving, it was centered around personal testimony of positive every day people, and it really brought home the importance of what we were proposing to do.
  • During and after the writing of the proposal, the first issue that had to be decided was who needed to participate in order for us to achieve our aims.
    The partners involved in the writing of the grant identified 4 “community” groups that they felt needed to be included in the proposed project and began reaching out to these groups. The involved CBOs and community members began actively recruiting others from agencies/CBOs, grassroots organizations, and neighborhoods to begin forming a consortium. This initial group was composed of 14 community members representing these various groups.
  • During the writing phase, we decided on the organizational structure of a consortium that encompassed ALL interested individuals and organizations. The Steering Committee, comprised of academic and community members, drives the research, manages and conducts project related activities, emphasizing equal partnership, collective decision-making and active participation. Finally we also had staff built into the grant who work with the Steering Committee to make everything happen. To mention a few but not all key positions, Project Coordinator and Community Outreach Specialist – all community outreach activities. Flexible
  • The Consortium developed a broad mission statement that extended beyond HIV prevention, since GRACE hopes to be sustainable beyond this grant, and hopes to address other health disparities in the future.
  • We have built in several processes to continually build the group’s capacity for action. The “isms” training, provided by Visions, Inc., is used to ensure and support the pluralism & inclusiveness of all relationships and processes in the research project, and to understand the impact of racism, sexism, classism, heterosexism and other “isms” on health disparities and how to overcome the “isms”. This gave us a foundation to build a successful coalition among university, community and agency partners.
    A really crucial element has been to include a consultant from Visions as a “process consultant” who attends every meeting. The consultant’s role is to make sure that we work through all processes and any difficulties in a safe and respectful way, paying attention to the potential isms and biases that may be underlying our interactions. Having this consultant involved throughout the past 3 years has enabled us to handle difficulties along the way and still maintain mutual respect.
    The process evaluation, retreat, and coalition building sessions have similarly been used to continue our growth and capacity building.
  • The first 3 stages were focused on building the consortium, structure, process and capacity. The 4th stage moved us into the research phase of the project. We designed a community needs and assets assessment to enable us to plan an appropriate intervention. 11 focus groups were conducted among males and females, designed to elicit opinions on the contributors to HIV in the community, and the needs, assets and resources for interventions to reduce HIV. We also conducted 37 stakeholder semi-structured interviews to examine perceptions of the needs, strengths, and resources in Edgecombe-Nash counties and explore the proposed determinants that contribute to the spread of HIV. Participants were identified by Consortium members and were selected across several stakeholder categories, including politicians, law enforcement, media, recreation, grassroots leaders, faith/religious and others. We took all of the information gathered from the needs assessment and used it to engage in a process called intervention mapping. The process was used to systematically plan an intervention using the information we learned. In brief, the intervention goal is to reduce new HIV/STI diagnoses via a lay health advisor program targeting youth ages 10-14 years & and the parents/parental figures of these youth together as dyads. Our next planning steps will be to pre-test some of the pieces of the curriculum, and then to pilot test the intervention.
    Focus Groups--Recruitment--Participants were recruited from both Edgecombe & Nash counties.
    11 Focus Group Sessions--Focus groups were conducted in local community centers; each group lasted 1-2 hours, 3 general adult female, 2 general adult male, 2 young adult female, 2 young adult male, 1 formerly incarcerated female, 1 formerly incarcerated male
    Stakeholder interviews 20 representing Nash County and 17 representing Edgecombe County, Participants were identified by Consortium members
    I think we should also state one of the general female group was classified as women who attend church on a regular basis
  • Among the many lessons learned over the past 2 plus years, we have found that this planned approach has been successful in engaging a broad representation of the community. The consortium membership went from 15 to 57, and includes agencies and individuals. Most of the steering committee resides or works in the two counties, and community members are highly active in committees, where most of the work gets done. We have also held two community forums to present our results and plans to the community, which were extremely well attended. Being flexible to let this process evolve has been crucial. For example, we had many people who wanted to be members of the Steering Committee, but all of the designated voting slots were filled, and everyone felt that expanding the voting membership would make the group too cumbersome. So, the group developed the idea of having ex-officio members who can participate in steering committee meetings and activities and provide their valuable input. Making people feel welcome in the group, making people feel like their opinion is important, and that their commitment is important all contribute to a sense of ownership of the project. This includes simple things like introducing people at the first meeting they attend, name tags, and working to get newcomers involved. It also includes being flexible in our communication strategies. For example, when community members told us that email wasn’t always the best mode of communication, we added automated calls to remind folks about meetings. We feel that paying close attention to all of the details described, such as developing by-laws and focusing on process, have been crucial to sustain the engagement of community members.
    Consortium Membership--retained 80% of members
    Steering Committee--Retained 88% of members
    Working Committees--Chaired by community members
    Community Forums--We’ve had two community forums, and over 50 community members attended each
  • Here are a few resources. Did not want to overwhelm you. Explain each. Hope this has been helpful. Be happy to answer questions now or during your process if you need help. Thank you.
  • Explicit statement on the theory that might explain differences in health outcomes
    Often we control in our analyses for factors such as occupation, gender, education without a clear statement of theory of causality- leaves the explaination of causality to the reader- because people tend to attribute behavior to intrisinc properties of the person – biologic determination becomes a likely explaination among biomedically trained persons in particula
  • Transcript

    • 1. Engaging Communities of Color in Aging Research Giselle Corbie-Smith, MD University of North Carolina –Chapel Hill Program on Health Disparities Sheps Center for Health Services Research NC Translational and Clinical Science Institute
    • 2. Overview • How did we get to mandated inclusion? • Are older minorities underrepresented in research? • Influences on participation of older minorities • Role of community engagement
    • 3. How Did We Arrive at Mandated Inclusion? • Public reports of ethical misconduct raised concerns about vulnerability in research – Nuremberg Trials – Willowbrook Study – Jewish Chronic Disease Hospital – US Public Health Study at Tuskegee • Belmont Report reinforced the need to protect groups considered vulnerable by physical, mental or social and economic circumstances
    • 4. How Did We Arrive at Mandated Inclusion? • Little public pressure to enter clinical research due to perception of high risk and low benefit • HIV/AIDS became a pivotal event in research participation – Research seen as offering best and least costly hope to victims – AIDS victims campaigned to gain admission to clinical studies • Shift in clinical research being considered a risky burden to a prized benefit from which no one should excluded
    • 5. Why Worry About Minority Inclusion in Clinical Research • 1993 NIH Revitalization Act – Participation of racial and ethnic minorities in clinical trials is critical for understanding and eliminating racial and ethnic health disparities • to better understand disparities in health • to improve the generalizability of research findings – Clinical research drives advances in medical care – “You gotta be in it to win it”
    • 6. Minority Enrollment for NIH Extramural Phase III Research Protocols (Reported in FY 2003) 0 10 20 30 40 50 60 Amer. Indian/ Alaskan Native Asian Black Hawaiian/ Pacific Islander White More than one race Unknown/ Other Unknown Male Female Dept. of Health and Human Services, (2004). Comprehensive Report: Tracking of Human Subjects Research Reported in FY 2002 and FY 2003. # of protocols = 5153 n = 9,378,140 Percentage
    • 7. Enrollment of nonwhites in heart failureEnrollment of nonwhites in heart failure randomized controlled trialsrandomized controlled trials Heiat A, Gross CP, Krumholz HM. Arch Intern Med. 2002; 162(15):1684.
    • 8. Barriers to Accrual • Barriers to awareness – Lack of education about trials – Lack of dissemination of study opportunities to patients/providers – Lack of knowledge about the origins of cancer • Barriers to opportunity – Cost – Functional status – Study’s duration and visit structure – Time commitment – Lack of or inadequate health insurance – Lack of transportation – Provider attitudes • Barriers to acceptance – Perceived harms of clinical trial participation – Mistrust of research, researchers, and the medical system – Fear – Family considerations Ford, Howerton, Bolen, et al. AHRQ Evidence Report. 2005
    • 9. Promoters of accrual • Promoters of awareness – Education programs for community physicians – Adequate knowledge about study – Workshop on trials • Promoters of opportunity – Culturally relevant education about trials – Providing transportation • Promoters of acceptance – Altruism – Perceived benefits of trial participation – Incentives Ford, Howerton, Bolen, et al. AHRQ Evidence Report. 2005
    • 10. Distrust and African Americans • Thought to stem from the history of racial discrimination and exploitation – US Public Health Service Syphilis Study at Tuskegee – Experiences extending back to slavery – Medical and surgical experimentation on slaves – Robbery of Black graves for cadavers in medical education – Current fear of hospitalization
    • 11. African Americans and Distrust • Distrust exists among both Blacks and Whites • African Americans more likely to believe – doctors would ask them to participate in harmful research or expose them to unnecessary risks – doctors would not explain research or would treat them as part of an experiment without their consent • African Americans had 5 times odds of having highest distrust scores • Differences persisted after controlling for markers of socioeconomic status • Still need to explore the contributions of interpersonal and societal trust • Demonstrating our trustworthiness one important step in improving minority participation Corbie-Smith et al, Archives of Internal Medicine, Nov 2002
    • 12. Social and Health Priorities of Older African Americans and Latinos • Focus group with older Latinos and African Americans, and survey of community-based organizations serving older African Americans or Latinos – Affordable housing, enough money to meet their needs, adequate transportation, and safer neighborhoods were urgent priorities for older Latinos and African Americans and superseded their health concerns – Distrust of researchers, lack of information, caregiver obligations, fear of experimentation, and lack of benefits were identified as barriers to research participation • Willing to participate if fully informed, perceive tangible benefits and congruence between the objectives of researchers and participants Nápoles-Springer et al. Research on Aging 2000; 22; 668
    • 13. Consumer Centered Models in Mental Health Research in Older Minorities • Consult with community opinion leaders, gatekeepers, and representative consumers when designing their research – focus groups and advisory boards made up of members from the target community – improves research groups’ ability to understand community-specific recruitment/retention – collaboratively develop methods for overcoming • Include staff members who are ethnically similar to, have experience working with, or are members of the target population – may also be more sensitive to participants’ reactionsand can provide feedback • Method of anticipating respondent burden to minimize attrition • Provide feedback to the target community Arean, The Gerontologist, 2003
    • 14. Success in longitudinal studies of aging • Use of a culturally grounded approach to recruitment and retention • Assign the same interviewers to communicate with and interview study participants for each wave of data collection. • Ensure that all interviewers are knowledgeable of cultural values and norms, possible family dynamics, and social issues within the African American community. • Provide a mechanism by way of the toll-free number for all study participants to contact the project staff at their convenience. • Allow flexibility in scheduling and/or rescheduling interviews at the participant’s convenience. Dilworth-Anderson and Williams, J Aging Health 2004; 16; 137S
    • 15. Surface Structure vs. Deep Structure Recruitment Strategies Surface Structure • PSAs on minority radio stations • PSAs on television • Advertisements in minority newspapers Deep Structure • Radio interview with a credible host in the target market, coupled with traditional PSAs • Station viewed by the target market, particular hours, and use of cable channels • Include a story written about the study and investigators in credible print media, coupled with ads Resnicow et al, Ethn Dis. 1999 Winter;9(1):10-21
    • 16. Suggestions for Effective Recruitment and Retention • “Stop by when you don’t want something” • Community involvement in research infrastructure • Use appropriate channels of communication • Demonstrate an appreciation for barriers • Offer an incentive that is meaningful to participants • Provide feedback and disseminate findings • “Ask” people to participate
    • 17. What Happens When You Ask? • Widely claimed that minority groups are less willing than non-Hispanic whites to participate in health research • Examined 20 health research studies • Small differences by race/ethnicity in willingness to participate – non-intervention studies: African Americans had slightly lower consent rates; Clinical and surgical interventions: slightly higher consent rates than non-Hispanic whites Wendler et al. PLoS Med.2006
    • 18. “If you're targeting minority groups, you have a lot of community issues that you've got to work through…buy in from churches, local, opinion leaders… I think you've got a lot more foot work to do and discussions to occur so that the community is fully aware of what the project is about because misperceptions can really destroy a study. Even if the study is done, everything is perfect, the IRB completely agrees and it's been reviewed. The study can be destroyed by misperception.” Investigator, stroke clinical trials in minority communities Role of Community Involvement
    • 19. Why Involve Communities? • Investigators bring technical knowledge about topic and expertise in research methodology • Community members bring in depth knowledge of community concerns, needs, values, and priorities – Providing the framework for study questions, – Identifying ethical concerns about the project, – Suggesting how to modify the study to increase acceptance of the research in the community, – Assuring that data collection instruments are culturally appropriate, – Promoting enrollment and retention in the study. • Input from community members can be important for understanding risks research poses and identifying most acceptable methods of ameliorating them • Enhances ability of community groups to use research results in advocating for social change
    • 20. Examining Ethical Principles • Due to social, historical and economic contexts, ethical principles need to be examined in underserved communities – Respect for persons: Informed consent may need to be examined if participants are vulnerable in many ways and live in communities that lack economic and political power – Beneficence: Participants and community representatives may have a markedly different assessment of benefits and risks of research than researchers or IRBs – Justice: Often focuses on equitable selection of subjects; in communities where there may be multiple vulnerabilities additional issues of power, responsibility, trust, context, and history must be considered
    • 21. Approaches to Community Involvement • Range of involvement from none to passive to active to partner/collaborators – Investigators consult with individuals “at the periphery of community cultural systems” – Investigators consult with influential community members for endorsement and support, but not advice or guidance – Investigators consult with influential community members for support, advice, and guidance, usually through an advisory board – Investigators partner with the community to define problem, identify potential solutions, and conduct research -- community as collaborator -- negotiating goals and conduct of study and analysis and use of findings • Potential for manipulation especially when involvement is limited and decision-making power of community members is absent
    • 22.  “If I do all of this and it benefits society… given the way brothers are treated [in this country] how is it going to help me?”
    • 23. Perceptions of Research Participation • Doubt and distrust about research participation • Not sure if research participation will lead to improved health for them or their community • Aware of the disparities in health and access to care • Experiences in clinical care inform their expectation of research participation
    • 24. How Can Investigators Ensure That Participation in Research Translates Into Tangible Benefits for Minority Communities?
    • 25. Rethinking Benefit • Expected outcome of participation is benefit • Potential direct benefits of receiving a particular intervention in a clinical study • Collateral benefits of study participation such as free medical care • Societal benefits that accrues to others in greater society King NMP. The Journal of Law, Medicine and Ethics 2000
    • 26. “Societal Benefit” and Minority Communities • Disparities in health are in part determined by social and environmental inequities • Consider ways to affect socioeconomic factors – Build capacity among community leaders – Creating opportunities for employment and training – Building and supporting infrastructure – Provide the results of study findings • Take cues from international efforts – HIV/AIDS trials – NBAC guidelines on conducting trials in resource poor countries – Other nations as examples: New Zealand and Maori Corbie-Smith, et al, Archives of Internal Medicine, 2004
    • 27. “Societal Benefit” and Minority Communities • Need a deliberate multidimensional approach – Opportunity to demonstrate our trustworthiness – Close the circle between inclusion of minorities in clinical research and disparate health outcomes – So that research participation is not another example of inequities so evident in this country
    • 28. Types of Engagement • Investigator Initiated Community Based Research • Research Collaborations – One on one – Multiple organizations • Community Advisory Boards • Community Based Participatory Research
    • 29. Why CBPR? • Complex health and social problems ill- suited to “outside expert” research • Increasing community and funder demands for community-driven research • Disappointing results in intervention research • Increasing understanding of importance of local and cultural context • Increasing interest in use of research to improve best practices/best process Source:
    • 30. Definition of CBPR “CBPR is a collaborative approach to research that equitably involves all partners in the research process and recognizes the unique strengths that each brings. CBPR begins with a research topic of importance to the community with the aim of combining knowledge and action for social change to improve community health and eliminate health disparities.” W.K. Kellogg Community Scholar’s Program (2001)
    • 31. What is and is not CBPR? • CBPR is an orientation to research – a collaborative approach that changes the role of researcher and researched • CBPR is an applied approach – Goal is to influence change in community health, systems, programs, or policies • CBPR is not a method or set of  methods Source: See
    • 32. Perspectives on CBPR… extremes of a continuum Community: Research as imposing on or using vs. benefiting or involving the community Academia: Community participation as largely incompatible with rigorous research
    • 33. Health Concerns Identified Study Designed and Funding Sought Participants recruited and retention systems implemented Measurement instruments designed and data collected Intervention designed and implemented Data analyzed and interpreted Translation of findings C. helps identify key issues  Incr. motivation to participate Traditional Research C. helps with study design, budget, proposal submission  Incr. acceptability and “buy-in” Issues selected from Epid. data Design: science and feasibility Budget: research expenses Community-Based Participatory Research C. gives guidance re recruitment and retention  Enhanced recruitment and retention C. helps with measures development and testing  Increased reliability and validity C. helps guide intervention development  Greater relevance and likelihood for success C. helps with data interpretation and publications  Enhanced potential for translation and dissemination Researchers report findings from analysis and publish in peer review journals Intervention designed by researchers based on literature and theory Measures adopted or adapted from other studies, psychometric testing Recruitment and Retention based on science and “best guesses”
    • 34. Principles of CBPR • Acknowledges community as a unit of identity • Builds on strengths and resources within the community • Facilitates a collaborative, equitable partnership in all phases of research, involving an empowering and power- sharing process that attends to social inequalities
    • 35. Principles of CBPR • Fosters co-learning and capacity building among all partners • Seeks balance between knowledge generation and intervention (research and action) • Focuses on the local relevance of public health problems and pays attention to the multiple determinants of health
    • 36. Principles of CBPR • Involves a cyclical and iterative process • Disseminates results to all partners and involves them in the wider dissemination of results • Involves a long-term process, relationship and commitment to sustainability Source: Israel, Eng, Schulz, and Parker 2005
    • 37. CBPR Tools and Approaches • Focus groups • Interviews • Windshield Tours • Community Capacity Inventory • Community Asset Maps • Risk Mapping • Community Dialogues • Photovoice Source: Minkler and Wallerstein, 2008
    • 38. Project GRACE: Building and sustaining effective CBPR partnerships to address HIV disparities Giselle Corbie-Smith, Principal Investigator
    • 39. How Project GRACE Started • NIH Request for Application – National Center for Minority Health and Health Disparities (NCMHD) – Community-Based Participatory Research (CBPR) – Goal to reduce/eliminate health disparities – 3 year needs assessment – Pilot intervention
    • 40. Planned Approach to Partnership Development • Stage 1: Initial mobilization • Stage 2: Establishment of organizational structure • Stage 3: Capacity building for action • Stage 4: Planning for action Source: Florin P, Mitchell R, Stevenson J. Identifying training and technical assistance needs in community coalitions: a developmental approach. Health Educ Res 1993;8(3):417-32.
    • 41. Stage 1: Initial Mobilization— Writing the Grant • University of North Carolina at Chapel Hill invites the community to the table at the outset • Community-based organization (CBO) liaison • Assembled a group of CBOs to provide input • Components developed by working committees • Presentation to the larger community
    • 42. Who is at the Table? • The “Community” – Subcontractors – Agency/CBO Representation – Grassroots Representation – Individual Representation
    • 43. Stage 2: Establish Organizational Structure Project GRACE Consortium Comprised of **51** organizations and **43** individuals Membership & By-Laws Sub-Committee Events Planning Sub-Committee Research Design Sub-Committee Fiscal/ Budget Sub-Committee Nominations Sub-Committee Communications & Publications Sub-Committee Steering Committee Area L AHEC (Comm Outreach Spec) Nash Co. Health Dept. Better Days Ahead Nash Health Care Systems CEO (Youth LHA Supv) New Sources, Inc. (Parent LHA Supv) Citizens of Edgecombe Co. Project Momentum, Inc. (COC) East Tarboro-Princeville CDC Rocky Mount OIC (Interviewer Supv) Edgecombe Co. Health Dept. Sozo Ministries Freedom Hill Community Health Center Visions, Inc. (Process Consultants) Heritage Hospital Wright Center, Inc. NAACP, Edgecombe County UNC-Chapel Hill (Project Coordinator, PI)
    • 44. The Consortium Mission To improve the health of minority and/or high-risk populations by establishing collaborative structures and processes that respond to, empower, and facilitate communities in defining and solving their own problems. Includes volunteers from many fields, including: -HIV/STI prevention and/or care services -Recreation -Edgecombe County and City Government -Private Business -Health Care Services -Mental Health Services & Support -Education & Educational Support for Youth -Character and Life Skills Training -Daycare Services -Employment assistance -Housing Assistance -Religious/Spiritual Support -Legislative Representation -Education & Educational Support for Young Adults and Adults -Local History/Genealogy for African Americans
    • 45. Stage 3: Capacity Building for Action • Initial and ongoing multicultural “isms” training • Process consultants at each community meeting • Annual process evaluation • Coalition building sessions • Periodic retreats to address concerns, progress and strategic planning
    • 46. Stage 4: Planning for Action • Identify community needs and assets to plan intervention • 11 focus groups conducted • 37 stakeholder interviews • Intervention mapping to plan intervention • Pre-test curriculum pieces • Pilot test intervention
    • 47. Lessons Learned • Planned approach has resulted in effective engagement of community members – Consortium membership increased from 15 to 57 – Representation from 51+ community agencies and 43 individuals – 82% of steering committee reside or work in the two counties – Community members chair 5 of the 6 working committees – Over 100 people attended community forums • Need for flexibility in by- laws, organizational structure and processes • Paying close attention to organizational structure, developing by-laws and focusing on process have been crucial
    • 48. Summary • Multiple factors influence participation in research • Effective strategies are – Multidimensional – Engage target populations – Address community concerns and expectations
    • 49. NC TraCS and Community Engagement in Translational Research Giselle Corbie-Smith, MD, MSc Deputy Director, NC TraCS Institute Director, Community Engagement Core Director, Program on Health Disparities Sheps Center (866) 705-4931
    • 50. Clinical and Translational Science Awards (CTSA) A national consortium of medical research institutions, working together and sharing a common vision to: • Improve the way biomedical research is conducted across the country • Reduce the time it takes for laboratory discoveries to become treatments for patients • Engage communities in clinical research efforts • Train the next generation of clinical and translational researchers
    • 51. CTSA Network 2009 To date, 46 institutions have received CTSA funding, the total is expected to reach 60 by 2010
    • 52.   NC Translational and Clinical Sciences (TraCS) Institute • Our mission: – transform all activities relating to clinical and translational research – create new programs and pathways that make it easier for research to be performed at UNC and throughout the State of North Carolina.
    • 53.   NC TraCS Community Engagement Core focused on conducting T2 research and ensuring community input and outreach: •Increased acceptance of and adherence to effective medical interventions •Improved recruitment and retention •Dissemination of culturally appropriate health-related information
    • 54. Community Engagement Core (CEC) Giselle Corbie-Smith, MD, MSc - Director CEC Purpose: Create permanent research structures Regional TraCS campuses-local community boards, single connection portal and core resources with stable research staff so that population research dictated by community needs can proceed rapidly and successfully. Guiding Principles: Two-way Exchange Bi-directional between university and community Participatory Approaches Co-learning , shared decision making, mutual ownership of products and processes Education and Training Specific capacity building for all partners – community, investigators and health care providers
    • 55. Regional TraCS Campus (RTC) Clinical Coordinator Community Based Organizations Community Research Network Clinical Research Network Community Outreach Specialist Healthy Carolinians Local Community Advisory Board Community Practices Practice Based Research Network University Researchers
    • 56. Regional TraCS Campuses 57
    • 57. The CEC provides consultation on a range of services, including: Connection Portal • Identify potential community and university partners for collaboration • Map service areas of research efforts Education and Training • Training – community and clinical audiences • Identify potential community and university partners for collaboration • Technical assistance at community level for pilot application process Regional TraCS Campuses • Local research staff • Identification of meeting space • Dissemination of study results • Assistance with study implementation/data collection (i.e. interviewing, focus groups, screening potential study participants, survey administration, etc.) • Coordination of community meetings • Identification of community-based organizations • Identification of clinical practices • Data entry • Report summaries
    • 58. NC TraCS Services Providing the infrastructure to increase the safety, speed, and rigor of patient-oriented research: TraCS Research Inquiry Desk Research Navigators IND/IDE Specialists Research Subject Advocates Recruitment Specialists Strategic Opportunities Data Management Biostatistics Ethics/Regulatory Bioinformatics Career Development Resources Education Consultation Services Clinical Trials Resources Core Facilities Dissemination Grant & IRB Assistance
    • 59. 60 NCNC TraCS Pilot Grant ProgramPilot Grant Program • TraC$2K TraCS offers up to $2,000 grants to assist researchers implement a proposed study, or move a research project forward by providing rapid access to funds that will support almost any aspect of promising and innovative research. • TraC$10K TraCS offers up to $10,000 grants to support researchers with the early development of a research idea, or to expand an existing study beyond the original scope into promising new directions. • Large Pilot Program The TraCS Large Pilot Grant serves as a stimulus for new research initiatives aimed at obtaining sufficient preliminary data to allow new applications for extramural funding. Each of these pilot programs will be offered multiple times within the first year of the CTSA. For specific program guidelines and application due dates, please visit our website
    • 60.  Questions? (866) 705-4931
    • 61. Additional CBPR Resources • CBPR Curriculum – • CBPR Toolkits – • Books – Israel BA, Eng E, Schulz AJ, Parker EA. (Eds.) (2005). Methods in Community-Based Participatory Research for Health. San  Francisco: Jossey-Bass. – Minkler, M, Wallerstein, E. (Eds.) (2008) Community-Based Participatory Research for Health: From Process to Outcomes. San Francisco: Jossey- Bass. •
    • 62. How Can We Move the Field  Forward • Don’t assume that others (or you) know  what you mean by race – Explicit definitions of race • More careful in invoking either  biological or social constructions of race • Statement on the theory that might  explain differences in health outcomes
    • 63.  Hutchins LF, Unger JM, Crowley JJ et al. N Engl J Med 1999;341:2061-7.).  Proportion of Blacks Enrolled in Trials of the Southwest OncologyProportion of Blacks Enrolled in Trials of the Southwest Oncology Group (SWOG) as Compared with the Proportion of Blacks in the U.S.Group (SWOG) as Compared with the Proportion of Blacks in the U.S. Population of Patients with Cancer, According to the Type of CancerPopulation of Patients with Cancer, According to the Type of Cancer