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Engaging Communities of
Color in Aging Research
Giselle Corbie-Smith, MD
University of North Carolina –Chapel Hill
Program...
Overview
• How did we get to mandated inclusion?
• Are older minorities underrepresented
in research?
• Influences on part...
How Did We Arrive at Mandated
Inclusion?
• Public reports of ethical misconduct raised
concerns about vulnerability in res...
How Did We Arrive at Mandated
Inclusion?
• Little public pressure to enter clinical research
due to perception of high ris...
Why Worry About Minority
Inclusion in Clinical Research
• 1993 NIH Revitalization Act
– Participation of racial and ethnic...
Minority Enrollment for NIH Extramural
Phase III Research Protocols
(Reported in FY 2003)
0
10
20
30
40
50
60
Amer.
Indian...
Enrollment of nonwhites in heart failureEnrollment of nonwhites in heart failure
randomized controlled trialsrandomized co...
Barriers to Accrual
• Barriers to awareness
– Lack of education about trials
– Lack of dissemination of study
opportunitie...
Promoters of accrual
• Promoters of awareness
– Education programs for community physicians
– Adequate knowledge about stu...
Distrust and African Americans
• Thought to stem from the history of racial
discrimination and exploitation
– US Public He...
African Americans and Distrust
• Distrust exists among both Blacks and Whites
• African Americans more likely to believe
–...
Social and Health Priorities of Older
African Americans and
Latinos
• Focus group with older Latinos and African
Americans...
Consumer Centered Models in Mental
Health Research in Older Minorities
• Consult with community opinion leaders, gatekeepe...
Success in longitudinal studies of
aging
• Use of a culturally grounded approach to recruitment and
retention
• Assign the...
Surface Structure vs. Deep Structure
Recruitment Strategies
Surface Structure
• PSAs on minority radio
stations
• PSAs on ...
Suggestions for Effective
Recruitment and Retention
• “Stop by when you don’t want something”
• Community involvement in r...
What Happens When You Ask?
• Widely claimed that minority groups are less
willing than non-Hispanic whites to participate
...
“If you're targeting minority groups, you have a lot of community issues
that you've got to work through…buy in from churc...
Why Involve Communities?
• Investigators bring technical knowledge about topic and
expertise in research methodology
• Com...
Examining Ethical Principles
• Due to social, historical and economic contexts,
ethical principles need to be examined in
...
Approaches to Community
Involvement
• Range of involvement from none to passive to active
to partner/collaborators
– Inves...
 “If I do all of this and it benefits
society… given the way brothers are
treated [in this country] how is it
going to hel...
Perceptions of Research
Participation
• Doubt and distrust about research
participation
• Not sure if research participati...
How Can Investigators Ensure That
Participation in Research Translates
Into Tangible Benefits for Minority
Communities?
Rethinking Benefit
• Expected outcome of participation is
benefit
• Potential direct benefits of receiving a
particular in...
“Societal Benefit” and Minority
Communities
• Disparities in health are in part determined by social
and environmental ine...
“Societal Benefit” and Minority
Communities
• Need a deliberate multidimensional
approach
– Opportunity to demonstrate our...
Types of Engagement
• Investigator Initiated Community Based
Research
• Research Collaborations
– One on one
– Multiple or...
Why CBPR?
• Complex health and social problems ill-
suited to “outside expert” research
• Increasing community and funder
...
Definition of CBPR
“CBPR is a collaborative approach to research that
equitably involves all partners in the research proc...
What is and is not CBPR?
• CBPR is an orientation to research
– a collaborative approach that changes the
role of research...
Perspectives on CBPR…
extremes of a continuum
Community: Research as
imposing on or using
vs.
benefiting or involving the
...
Health
Concerns
Identified
Study
Designed
and
Funding
Sought
Participants
recruited and
retention
systems
implemented
Meas...
Principles of CBPR
• Acknowledges community as a unit of
identity
• Builds on strengths and resources
within the community...
Principles of CBPR
• Fosters co-learning and capacity
building among all partners
• Seeks balance between knowledge
genera...
Principles of CBPR
• Involves a cyclical and iterative
process
• Disseminates results to all partners
and involves them in...
CBPR Tools and Approaches
• Focus groups
• Interviews
• Windshield Tours
• Community Capacity Inventory
• Community Asset ...
Project GRACE: Building and sustaining
effective CBPR partnerships to address
HIV disparities
Giselle Corbie-Smith, Princi...
How Project GRACE Started
• NIH Request for Application
– National Center for Minority Health and
Health Disparities (NCMH...
Planned Approach to
Partnership Development
• Stage 1: Initial mobilization
• Stage 2: Establishment of
organizational str...
Stage 1: Initial Mobilization—
Writing the Grant
• University of North Carolina at Chapel Hill invites
the community to th...
Who is at the Table?
• The “Community”
– Subcontractors
– Agency/CBO
Representation
– Grassroots
Representation
– Individu...
Stage 2: Establish Organizational
Structure
Project GRACE
Consortium
Comprised of **51** organizations and **43** individu...
The Consortium
Mission
To improve the health of minority and/or high-risk
populations by establishing collaborative
struct...
Stage 3: Capacity Building for
Action
• Initial and ongoing
multicultural “isms”
training
• Process consultants
at each co...
Stage 4: Planning for Action
• Identify community
needs and assets to plan
intervention
• 11 focus groups
conducted
• 37 s...
Lessons Learned
• Planned approach has
resulted in effective
engagement of community
members
– Consortium membership incre...
Summary
• Multiple factors influence participation in
research
• Effective strategies are
– Multidimensional
– Engage targ...
NC TraCS and Community
Engagement in Translational
Research
Giselle Corbie-Smith, MD, MSc
Deputy Director, NC TraCS Instit...
Clinical and Translational
Science Awards (CTSA)
A national consortium of medical research institutions, working
together ...
CTSA Network 2009
To date, 46 institutions have received CTSA funding,
the total is expected to reach 60 by 2010
 
NC Translational and Clinical
Sciences (TraCS) Institute
• Our mission:
– transform all activities relating to clinical ...
 
NC TraCS Community Engagement Core
focused on conducting T2 research and ensuring community
input and outreach:
•Increas...
Community Engagement Core (CEC)
Giselle Corbie-Smith, MD, MSc - Director
CEC Purpose:
Create permanent research structures...
Regional TraCS Campus (RTC)
Clinical
Coordinator
Community Based
Organizations
Community Research
Network
Clinical Researc...
Regional TraCS Campuses
57
The CEC provides consultation on
a range of services, including:
Connection Portal
• Identify potential community and univ...
NC TraCS Services
Providing the infrastructure to increase the safety,
speed, and rigor of patient-oriented research:
TraC...
60
NCNC TraCS Pilot Grant ProgramPilot Grant Program
• TraC$2K
TraCS offers up to $2,000 grants to assist researchers impl...
 Questions?
www.tracs.unc.edu
(866) 705-4931
Additional CBPR Resources
• CBPR Curriculum
– http://www.cbprcurriculum.info/
• CBPR Toolkits
– http://www.shepscenter.unc...
How Can We Move the Field 
Forward
• Don’t assume that others (or you) know 
what you mean by race
– Explicit definitions ...
 Hutchins LF, Unger JM, Crowley JJ et al. N Engl J Med 1999;341:2061-7.). 
Proportion of Blacks Enrolled in Trials of the ...
Minority Inclusion in Research: Lessons Learned and Questions to ...
Minority Inclusion in Research: Lessons Learned and Questions to ...
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Minority Inclusion in Research: Lessons Learned and Questions to ...

  1. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 24. How Can Investigators Ensure That Participation in Research Translates Into Tangible Benefits for Minority Communities?
  25. 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. 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. 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. 28. Types of Engagement • Investigator Initiated Community Based Research • Research Collaborations – One on one – Multiple organizations • Community Advisory Boards • Community Based Participatory Research
  29. 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: hsc.unm.edu/som/fcm/cpr/docs/CBPR_Intro.ppt
  30. 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. 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 hsc.unm.edu/som/fcm/cpr/docs/CBPR_Intro.ppt
  32. 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. 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. 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. 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. 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. 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. 38. Project GRACE: Building and sustaining effective CBPR partnerships to address HIV disparities Giselle Corbie-Smith, Principal Investigator
  39. 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. 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. 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. 42. Who is at the Table? • The “Community” – Subcontractors – Agency/CBO Representation – Grassroots Representation – Individual Representation
  43. 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. 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. 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. 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. 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. 48. Summary • Multiple factors influence participation in research • Effective strategies are – Multidimensional – Engage target populations – Address community concerns and expectations
  49. 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 www.tracs.unc.edu (866) 705-4931
  50. 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. 51. CTSA Network 2009 To date, 46 institutions have received CTSA funding, the total is expected to reach 60 by 2010
  52. 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. 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. 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. 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. 56. Regional TraCS Campuses 57
  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. 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. 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 www.tracs.unc.edu
  60. 60.  Questions? www.tracs.unc.edu (866) 705-4931
  61. 61. Additional CBPR Resources • CBPR Curriculum – http://www.cbprcurriculum.info/ • CBPR Toolkits – http://www.shepscenter.unc.edu/research_programs/aging/publications/CEA • 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. 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. 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

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