engaging communities of color in aging research

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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. Engaging Communities of Color in Aging Research. Overview. How did we get to mandated inclusion? - PowerPoint PPT Presentation

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  • Engaging Communities of Color in Aging ResearchGiselle Corbie-Smith, MDUniversity of North Carolina Chapel HillProgram on Health DisparitiesSheps Center for Health Services ResearchNC Translational and Clinical Science Institute

  • OverviewHow did we get to mandated inclusion?Are older minorities underrepresented in research?Influences on participation of older minoritiesRole of community engagement

  • How Did We Arrive at Mandated Inclusion?Public reports of ethical misconduct raised concerns about vulnerability in researchNuremberg TrialsWillowbrook StudyJewish Chronic Disease Hospital US Public Health Study at TuskegeeBelmont Report reinforced the need to protect groups considered vulnerable by physical, mental or social and economic circumstances

  • How Did We Arrive at Mandated Inclusion?Little public pressure to enter clinical research due to perception of high risk and low benefitHIV/AIDS became a pivotal event in research participationResearch seen as offering best and least costly hope to victims AIDS victims campaigned to gain admission to clinical studiesShift in clinical research being considered a risky burden to a prized benefit from which no one should excluded

  • Why Worry About Minority Inclusion in Clinical Research1993 NIH Revitalization ActParticipation 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 findingsClinical research drives advances in medical careYou gotta be in it to win it

  • Minority Enrollment for NIH Extramural Phase III Research Protocols(Reported in FY 2003)Dept. of Health and Human Services, (2004). Comprehensive Report: Tracking of Human Subjects Research Reported in FY 2002 and FY 2003.# of protocols = 5153n = 9,378,140Percentage

  • Enrollment of nonwhites in heart failure randomized controlled trialsHeiat A, Gross CP, Krumholz HM. Arch Intern Med. 2002; 162(15):1684.

  • Barriers to Accrual Barriers to awarenessLack of education about trialsLack of dissemination of study opportunities to patients/providersLack of knowledge about the origins of cancerBarriers to opportunityCostFunctional statusStudys duration and visit structureTime commitmentLack of or inadequate health insuranceLack of transportationProvider attitudesBarriers to acceptancePerceived harms of clinical trial participationMistrust of research, researchers, and the medical systemFearFamily considerationsFord, Howerton, Bolen, et al. AHRQ Evidence Report. 2005

  • Promoters of accrualPromoters of awarenessEducation programs for community physiciansAdequate knowledge about studyWorkshop on trialsPromoters of opportunityCulturally relevant education about trialsProviding transportationPromoters of acceptanceAltruismPerceived benefits of trial participationIncentivesFord, Howerton, Bolen, et al. AHRQ Evidence Report. 2005

  • Distrust and African AmericansThought to stem from the history of racial discrimination and exploitation US Public Health Service Syphilis Study at TuskegeeExperiences extending back to slaveryMedical and surgical experimentation on slavesRobbery of Black graves for cadavers in medical educationCurrent fear of hospitalization

  • African Americans and DistrustDistrust exists among both Blacks and WhitesAfrican Americans more likely to believe doctors would ask them to participate in harmful research or expose them to unnecessary risksdoctors 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 scoresDifferences persisted after controlling for markers of socioeconomic statusStill 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

  • Social and Health Priorities of Older African Americans andLatinosFocus group with older Latinos and African Americans, and survey of community-based organizations serving older African Americans or LatinosAffordable 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 participationWilling to participate if fully informed, perceive tangible benefits and congruence between the objectives of researchers and participants

    Npoles-Springer et al. Research on Aging 2000; 22; 668

  • Consumer Centered Models in Mental Health Research in Older MinoritiesConsult with community opinion leaders, gatekeepers, and representative consumers when designing their researchfocus groups and advisory boards made up of members from the target communityimproves research groups ability to understand community-specific recruitment/retention collaboratively develop methods for overcomingInclude staff members who are ethnically similar to, have experience working with, or are members of the target populationmay also be more sensitive to participants reactionsand can provide feedback Method of anticipating respondent burden to minimize attritionProvide feedback to the target community

    Arean, The Gerontologist, 2003

  • Success in longitudinal studies of agingUse of a culturally grounded approach to recruitment and retentionAssign 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 participants convenience.

    Dilworth-Anderson and Williams, J Aging Health 2004; 16; 137S

  • Surface Structure vs. Deep Structure Recruitment StrategiesSurface StructurePSAs on minority radio stations

    PSAs on television

    Advertisements in minority newspapers

    Deep StructureRadio 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 adsResnicow et al, Ethn Dis. 1999 Winter;9(1):10-21

  • Suggestions for Effective Recruitment and RetentionStop by when you dont want somethingCommunity involvement in research infrastructureUse appropriate channels of communicationDemonstrate an appreciation for barriers Offer an incentive that is meaningful to participantsProvide feedback and disseminate findingsAsk people to participate

  • What Happens When You Ask?Widely claimed that minority groups are less willing than non-Hispanic whites to participate in health researchExamined 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 whitesWendler et al. PLoS Med.2006

  • If you're targeting minority groups, you have a lot of community issues that you've got to work throughbuy 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 communitiesRole of Community Involvement

  • Why Involve Communities?Investigators bring technical knowledge about topic and expertise in research methodologyCommunity 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 themEnhances ability of community groups to use research results in advocating for social change

  • 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 powerBeneficence: Participants and community representatives may have a markedly different assessment of benefits and risks of research than researchers or IRBsJustice: 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

  • Approaches to Community InvolvementRange 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