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THE CRAB:

THE CRAB:. HELPING INVESTIGATORS THINK ‘OUTSIDE THE BOX’ Angela F. Ford, MSW, Phd (cand.) Associate Director Center for Minority Health Graduate School of Public Health University of Pittsburgh American Public Health Association Annual Meeting Washington DC November 9, 2004.

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THE CRAB:

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  1. THE CRAB: HELPING INVESTIGATORS THINK ‘OUTSIDE THE BOX’ Angela F. Ford, MSW, Phd (cand.) Associate Director Center for Minority Health Graduate School of Public Health University of Pittsburgh American Public Health Association Annual Meeting Washington DC November 9, 2004 Center for Minority Health,Graduate School of Public Health, University of Pittsburgh

  2. Angela F. Ford, MSW Associate Director Center for Minority Health Graduate School of Public Health University of Pittsburgh Valire Carr Copeland, PhD Associate Professor School of Social Work University of Pittsburgh Stephen B. Thomas, PhD Director, Center for Minority Health Philip Hallen Professor of Community Health & Social Justice Graduate School of Public Health University of Pittsburgh Jeannette South-Paul, MD Chair, Department of Family Medicine University of Pittsburgh Medical Director, University of Pittsburgh Medical Center Division of Community Health Services Contributing Faculty & Staff Center for Minority Health,Graduate School of Public Health, University of Pittsburgh

  3. Center for Minority HealthStephen B. Thomas, PhD., Director • Established in 1994 • Committed to translating evidence-based research into community-based interventions and innovative outreach practices • Provides the infrastructure, among the Schools of Health Sciences, for addressing health issues among ethnic and racial minority and other vulnerable and underserved populations. • Activities are closely tied to the National Initiative to Eliminate Racial and Ethnic Disparities in Health and the Nation’s health promotion and disease prevention agenda established in Healthy People 2010, whose goals are: • To increase the quality and years of healthy life • To eliminate health disparities Center for Minority Health,Graduate School of Public Health, University of Pittsburgh

  4. Health Disparity Priority Areas Cancer Screening and Management Cardiovascular Disease Diabetes HIV Infection/AIDS Immunizations (adult and child) Infant Mortality Mental Health Center for Minority Health,Graduate School of Public Health, University of Pittsburgh

  5. CENTER FOR MINORITY HEALTH Graduate School of Public HealthUniversity of Pittsburgh Funded by the National Institutes of Health National Center for Minority Health and Health Disparities Center for Minority Health,Graduate School of Public Health, University of Pittsburgh

  6. EXPORT (Excellence in Partnerships for Community Outreach, Research on Health Disparities and Training) HEALTH Center for Minority Health,Graduate School of Public Health, University of Pittsburgh

  7. EXPORT HEALTH Community Outreach and Information Dissemination Core • builds upon the existing infrastructure within the Center for Minority Health • integrates the EXPORT Center into existing CMH community based health promotion activities • serves as the conduit for increasing our capacity to do community-based participatory research Angela Ford, MSWCo-Director Dr. Valire Carr-Copeland Co-Director Center for Minority Health,Graduate School of Public Health, University of Pittsburgh

  8. Facilitates Communication Between Investigator and Community Opportunity for Researchers to Learn about Community and Cultural Norms Provides Forum for Dissemination of Research Findings CRAB Opportunity to Learn about Research Process Opportunity to Improve Process of Informed Consent Increases Likelihood That Study Will Be Culturally Competent Provides feedback and recommendations Fosters Partnership Facilitates liaison and partnership Center for Minority Health,Graduate School of Public Health, University of Pittsburgh

  9. African American Stakeholders and Opinion Leaders Consumers Survivors Community activists Clergy Police officer Paramedic Accountant Family Practitioners Retired public health nurse Vietnam veteran Health educators University Faculty & Research Investigators Center for Minority Health,Graduate School of Public Health, University of Pittsburgh

  10. YWCA of Greater Pittsburgh Kingsley Association, Inc. Magee-Womens Hospital Centers for Healthy Hearts and Souls, Inc. Hosanna House, Inc. Mental Health Association Lemington Eldercare Services University Book Center Primary Health Care Services, Inc. Allegheny County Bureau of Drug/Alcohol Services Theological Seminary Minority Purchasing Council Hispanic Chamber of Commerce Sickle Cell Society, Inc. Macedonia FACE, Inc. Giant Eagle Groceries Greater Allen Baptist Church Rodman Street Baptist Church Theological Seminary – Metro Urban Institute Program for Women in Early Recovery (POWER) Member Affiliations Center for Minority Health,Graduate School of Public Health, University of Pittsburgh

  11. Graduate School of Public Health School of Social Work Center for Health Care Diversity (Duquesne Univ) School of Medicine Mercy Hospital Allegheny General Hospital Children’s Hospital School of Nursing Faculty Representation Center for Minority Health,Graduate School of Public Health, University of Pittsburgh

  12. Year 1: 2001 - 2002 • Met quarterly • Focused on: • Established trust and credibility • Developed operating principles & investigator guidelines • Increased members’ awareness related to: • Public Health • CMH • Racial & Ethnic Disparities in Health & Health care • Research (research ethics, informed consent, IRB) • Health literacy • Cultural competency • Clinical trials Center for Minority Health,Graduate School of Public Health, University of Pittsburgh

  13. Year 2: 2002 - 2003 • Met every other month & reviewed one presentation/month • Focused on: • Promoting the CRAB • Investigator presentations to the CRAB • Implementing and refining the process • Continued education and awareness • Provided feedback from CRAB members to PIs • CRAB members began receiving stipends Center for Minority Health,Graduate School of Public Health, University of Pittsburgh

  14. Year 3: 2003 - 2004 • Met monthly • Monthly presentations – added meetings due to demand • Continued to refine the process • Continued education • Revised guidelines • Agreed on Core group of members to stay on indefinitely to ensure continuity of process Center for Minority Health,Graduate School of Public Health, University of Pittsburgh

  15. The Challenge & Plan for Year 4 • While the CRAB is not a requirement or an IRB, it should be seen as credible and having some impact on the institution and the manner in which it conducts research. Therefore, we want to: • Continue to position the CRAB as an effective University entity, without making it a regulatory board. • Ensure that we are not being used as a vehicle to legitimize what investigators are already doing wrong. • Encourage investigators to come to the CRAB earlier in their grant application process. • Evaluate the experience of CRAB members and Investigators. • Create our own database of research being conducted in the African American community. • Community-level meetings on the Community Based Participatory Research Model have been planned for the summer. Center for Minority Health,Graduate School of Public Health, University of Pittsburgh

  16. OPERATING PRINCIPLES • Providing feedback, based on diverse perspectives • Increasing their awareness • Sharing knowledge and transferring information • Building both the academic and community capacity to conduct research Center for Minority Health,Graduate School of Public Health, University of Pittsburgh

  17. Applying the Ten Commandments of Community-based Research Creating opportunities for further collaboration and partnership Maintaining an active membership of 30 individuals at all times Committing to serve for two years. Rotating inactive members off in June of each year -- new members added OPERATING PRINCIPLES Center for Minority Health,Graduate School of Public Health, University of Pittsburgh

  18. Consult the community Value process as you value outcome Hold community objections to be the higher good Do not covet the community data Do not commit analysis of community data without community input Do not bear false witness towards community members Do not release findings before the community is consulted Train and hire community people Do not violate confidentiality Freely confess thyself to be biased Ten Commandments of Community Based Research Center for Minority Health,Graduate School of Public Health, University of Pittsburgh

  19. Compensation to Members • CRAB members attending at least 33% of the meetings during a given academic year will be paid $50 for each meeting attended. • Stipends will be paid in June of each year. • Individuals employed by the University (staff) will receive compensation if approved by their academic departments. • University faculty contribute their time and do not receive stipends. Center for Minority Health,Graduate School of Public Health, University of Pittsburgh

  20. Community consultation provides an opportunity for researchers to honestly explain their research and raise considerations of community benefits that the community must examine. They believe that honest disclosure by researchers will enhance community willingness to engage as participants in research that ultimately will be beneficial to the community. (Melton et al. 1988) Center for Minority Health,Graduate School of Public Health, University of Pittsburgh

  21. The community advisors may also guide researchers by anticipating issues that prospective participants may raise. Community representatives are more likely to question researchers with less intimidation and trepidation than are potential research study participants. This may serve as a model of conduct to reassure potential research study participants that it is reasonable and appropriate to question the motives and methods of researchers. (Melton et al. 1988) Center for Minority Health,Graduate School of Public Health, University of Pittsburgh

  22. Community consultation has numerous benefits for the researcher, the community, and the potential participant (Levine, 1986) Center for Minority Health,Graduate School of Public Health, University of Pittsburgh

  23. Investigator Guidelines • 15 minute presentation • Informal – no PowerPoint, etc. • Provide copies of all documents going to participants or potential participants • Answer questions – receive verbal feedback • Written feedback form – summarizing all responses, sent to PI within 10 days. Center for Minority Health,Graduate School of Public Health, University of Pittsburgh

  24. Adolescent Depression Post-Partum Depression Children and Type II Diabetes Gay Women – Health Environmental Justice Pediatrics – Vitamin D Emergency Medical Services Prostate Cancer Preventing Infections during Pregnancy Mental Health – Facial Disorders Chronic Disease Instrument Recruiting Women into Clinical Trials for Depression Treatment HIV/AIDS – Women 50+ Symptom Management in Metastasized Cancer Acupuncture Treatment of Menopause in Cancer Survivors Some Areas of Research Center for Minority Health,Graduate School of Public Health, University of Pittsburgh

  25. Freimuth et al., 2001 suggests that one crucial first step to improving the trust of African Americans in research would be to develop a comprehensive communication campaign about research. Excellence In Partnership, Outreach, Research & Training -Education Series- Overcoming Barriers to Recruitment and Retention of Racial and Ethnic Minority Populations in Medical and Public Health Research Community Based Participatory Research Involving Communities in Research: The Role of Community Advisory Boards Creating and Sustaining a Community Advisory Board: 20 years of Lessons Learned Center for Minority Health,Graduate School of Public Health, University of Pittsburgh

  26. LEADERSHIP IS CRITICAL Center for Minority Health,Graduate School of Public Health, University of Pittsburgh

  27. Co-Chairs Dr. Stephen B. Thomas, CMH Director Philip Hallen Professor of Community Health and Social Justice Dr. Jeannette South-Paul, Chair Department of Family Medicine University of Pittsburgh Medical Director, UPMC Division of Community Health Services Mr. Wilford Payne, Co-Chair Executive Director Primary Health Care Services, Inc. (A Chain of Federally Funded Health Centers) Center for Minority Health,Graduate School of Public Health, University of Pittsburgh

  28. ACKNOWLEDGEMENTS Members of the CRAB Center for Minority Health Faculty, Staff & Students with special thanks to Maya Gist & Veronica Sansing Principal Investigators who support the CRAB financially and in spirit and who seek our input & We gratefully acknowledge the support of the National Center for Minority Health & Health Disparities EXPORT Grant #: 5P60MD000207-03 Center for Minority Health,Graduate School of Public Health, University of Pittsburgh

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