1. Skills Building for Intervention and Research How Community Can Be Full Partners in the Research Process Stephan Oxendine, Facilitator Member, CAPS Community Advisory Board (2000-2005)

2. How Community Can Be Full Partners in the Research Process Workshop Outline I.Welcome and Introduction Presenter Introduction and Background Presenter Introduction and Background Workshop Goals and Objectives Workshop Goals and Objectives Packet Review Packet Review II.Legacy of community participation III.Principal Discussion (Interactive) Six questions and recommendations Six questions and recommendations IV.Summaries of Lessons Learned Two perspectives (community and research) Two perspectives (community and research) V.Q & A, Wrap Up and Evaluation

3. How Community Can Be Full Partners in the Research Process Presenter Research CAB Background San Francisco Department of Public Health, HIV Research Community Advisory Board – Member (1999- San Francisco Department of Public Health, HIV Research Community Advisory Board – Member (1999- Center for AIDS Prevention Studies (CAPS)/USCF, Community Advisory Board – Member (2000-2005) Center for AIDS Prevention Studies (CAPS)/USCF, Community Advisory Board – Member (2000-2005) HIV Vaccine Trials Network (HVTN), Phase III Committee – Member (2001- HIV Vaccine Trials Network (HVTN), Phase III Committee – Member (2001- Adult AIDS Clinical Trials Group (AACTG), Community Constituency Group (CCG) – Member (2003-2004) Adult AIDS Clinical Trials Group (AACTG), Community Constituency Group (CCG) – Member (2003-2004) AIDS Community Research Consortium, Board of Directors – Member (2002-2004) AIDS Community Research Consortium, Board of Directors – Member (2002-2004) Office of AIDS Research (National Institutes of Health) – Bethesda, MD - Community Consultant (2005) Office of AIDS Research (National Institutes of Health) – Bethesda, MD - Community Consultant (2005)

4. How Community Can Be Full Partners in the Research Process Objective:To stimulate a focused and robust dialogue on community participation in the research process Objective:To stimulate a focused and robust dialogue on community participation in the research process Goals:To raise the level of awareness, and to develop recommendations, for what may be required to achieve fully viable, demographically appropriate community partnerships with the research process Goals:To raise the level of awareness, and to develop recommendations, for what may be required to achieve fully viable, demographically appropriate community partnerships with the research process

5. How Community Can Be Full Partners in the Research Process Packet Review Overview of Research Process Overview of Research Process How to read a research paper How to read a research paper Research methodologies Research methodologies Working Together – CAPS manual Working Together – CAPS manual CAPS CAB Research Dissemination Brochure CAPS CAB Research Dissemination Brochure Workshop Slides Workshop Slides Evaluations Evaluations

6. How Community Can Be Full Partners in the Research Process “If you do what you have always done, you will get what you have always gotten.” Unknown

7. How Community Can Be Full Partners in the Research Process Full Partnership in Research is Rooted in Modern Area Social Activism Black Civil Rights Movement (1950s - 1960s) Black Civil Rights Movement (1950s - 1960s) Counter Culture ➟ Anti-War Movement (1960s - 1970s) Counter Culture ➟ Anti-War Movement (1960s - 1970s) Women’s Movement (1970s - 1980s) Women’s Movement (1970s - 1980s) Gay and Lesbian Movement (1970s - Present) Gay and Lesbian Movement (1970s - Present) HIV/AIDS Activist Movement (1980s - Present) HIV/AIDS Activist Movement (1980s - Present) –Current Status: Presence of Community Advisory Boards on all NIH funded research - and other DHHS - endeavors

8. How Community Can Be Full Partners in the Research Process I. What is the primary objective of any research endeavor?

9. How Community Can Be Full Partners in the Research Process II. Is it important for community to participate in the research process? If so, why and how? If so, why and how? If not, why not? If not, why not?Recommendations

10. How Community Can Be Full Partners in the Research Process III. Does community have responsibilities while participating in the research process? If so, what are they and why? If so, what are they and why? If not, why not? If not, why not? How does one prepare to successfully participate in the research process? How does one prepare to successfully participate in the research process?Recommendations

11. How Community Can Be Full Partners in the Research Process IV. Does research have responsibilities with respect to community participation in the research process? If so, what are they and why If so, what are they and why If not, why not? If not, why not?Recommendations

12. How Community Can Be Full Partners in the Research Process V. How should community use the research process? Participation Participation Findings FindingsRecommendations

13. How Community Can Be Full Partners in the Research Process VI. What must CABs do to ensure their continued viability? (Any areas not covered in prior discussion) Recommendations

14. How Community Can Be Full Partners in the Research Process Summary of Lessons Learned: Community Presenter’s Perspective

15. How Community Can Be Full Partners in the Research Process Lessons Learned - Community 1. CABS are not clubs. CABs can, and should, be an integral part of the process of conducting decisive, relevant and potentially life-altering, life-sustaining & life-saving research.

16. How Community Can Be Full Partners in the Research Process Lessons Learned - Community 2. Community can accrue a detailed understanding of the research process. Understanding and functioning as an integral part of the research process is a acquired skill set based on a tiered learning process and requires diligence and patience to achieve. Understanding and functioning as an integral part of the research process is a acquired skill set based on a tiered learning process and requires diligence and patience to achieve.

17. How Community Can Be Full Partners in the Research Process Lessons Learned - Community 3. Community possesses genuinely viable perspectives. Those perspectives, applied judiciously, constitute a valuable contribution Community input into the research process must be proactive Community input into the research process must be proactive The research process cannot read our minds – nor should it. The research process cannot read our minds – nor should it.

18. How Community Can Be Full Partners in the Research Process Lessons Learned - Community 4. Community can, and must, monitor the integrity of the research process in terms of: Relevance/Viability (The So-What? Question) Relevance/Viability (The So-What? Question) Structure and methodology Structure and methodology Ethics Ethics

19. How Community Can Be Full Partners in the Research Process Lessons Learned - Community 5. CABs can, and should, assume a greater role in educating their communities, both respectively and generally, as regards an understanding of, and participation in, the research process.

20. How Community Can Be Full Partners in the Research Process Lessons Learned - Community 6. Responsibility for participation by community in the research process is mutually incumbent. The research process, while it should always endeavor to do so, may not always succeed in ascertaining appropriate community perspectives. The research process, while it should always endeavor to do so, may not always succeed in ascertaining appropriate community perspectives. Community must also seek out the research process Community must also seek out the research process Neither can afford to stand on ceremony Neither can afford to stand on ceremony

21. How Community Can Be Full Partners in the Research Process Lessons Learned - Community 7. Optimal community partnerships with the research process require unmitigated support and cooperation by the Principal Investigator(s), their respective staffs and, ideally, the associated research institution.

22. How Community Can Be Full Partners in the Research Process Lessons Learned - Community 8. Generally speaking, the research process is ultimately more relevant and efficient, and the findings may accrue in a far more beneficial manner, if community is involved as early in the process as is possible.

23. How Community Can Be Full Partners in the Research Process Lessons Learned - Community 9. The research process has confirmed HIV as a public health phenomenon that must be approached in the broad light of its empirically-based, sociological context and that we ALL have a role to play.

24. Lessons Learned: Researcher’s Perspective Tri Do, MD, MPH Assistant Professor of Medicine UCSF Center for AIDS Prevention Studies How Community Can Be Full Partners in the Research Process

25. I. Community partners – whether they are community advisory board members, community agencies, or research participants from a population of interest – can enhance the quality any research program. Understand the importance of community stakeholders in the research process. Understand the importance of community stakeholders in the research process. Learn to value and respect their input. Learn to value and respect their input. NIH Reviewers often want to see community involvement in some form. NIH Reviewers often want to see community involvement in some form. How Community Can Be Full Partners in the Research Process

26. II. The nature and potential impact of the research, as well as the characteristics of the community itself, should guide decisions on the development of a community input process. For community-based research, consider creating formal relationships with community partner agencies. For community-based research, consider creating formal relationships with community partner agencies. For biomedical research, consider assembling a CAB. For biomedical research, consider assembling a CAB. Talk to other researchers who have experience with a given community about what structure makes the most sense. Talk to other researchers who have experience with a given community about what structure makes the most sense. Make no assumptions about what makes the most sense. Make no assumptions about what makes the most sense. How Community Can Be Full Partners in the Research Process

27. III. Rely on and place trust in informal conversations with community stakeholders to learn about the community before formally engaging the community. Every community is different and may not be based on those characteristics you might think are defining attributes. Every community is different and may not be based on those characteristics you might think are defining attributes. Your sense of the purpose in engaging the community will evolve as a result of these early conversations. Your sense of the purpose in engaging the community will evolve as a result of these early conversations. The formal process of engaging the community will also become apparent over time and is an iterative activity. The formal process of engaging the community will also become apparent over time and is an iterative activity. How Community Can Be Full Partners in the Research Process

28. IV. Be clear in your own mind about the purpose of engaging the community. Development of a research agenda Development of a research agenda Refinement of a set of research questions Refinement of a set of research questions Outreaching to community as research participants Outreaching to community as research participants Review of research methods and ethical issues Review of research methods and ethical issues Dissemination of research findings and translation into broader settings Dissemination of research findings and translation into broader settings One size does not fit all One size does not fit all How Community Can Be Full Partners in the Research Process

29. V. Devote resources for community-related activities in your budgets and even while developing research ideas. Make time for conversations with community stakeholders, in the absence of secured funding. Make time for conversations with community stakeholders, in the absence of secured funding. Job descriptions of key staff and scientists should include community-related activities. Job descriptions of key staff and scientists should include community-related activities. Describe key activities where your study interfaces the community in grant proposals and budget appropriately. Describe key activities where your study interfaces the community in grant proposals and budget appropriately. How Community Can Be Full Partners in the Research Process

30. VI. Follow through on the plan for community engagement. Selection of community members/partners should involve a highly formal process. Selection of community members/partners should involve a highly formal process. Begin any new engagement with an outlining of your scientific goals and detailed discussion of the process of community engagement. Begin any new engagement with an outlining of your scientific goals and detailed discussion of the process of community engagement. Be clear about your reason for engaging the community – their time and resources are not unlimited. Be clear about your reason for engaging the community – their time and resources are not unlimited. How Community Can Be Full Partners in the Research Process

31. Additional Resources Observational Research Methods Observational Research Methods http://emj.bmjjournals.com/cgi/reprint/20/1/54 Overview of Research Designs Overview of Research Designs http://emj.bmjjournals.com/cgi/reprint/19/6/546 Ethical Goals of Community Consultation in Research Ethical Goals of Community Consultation in Research http://www.nswp.org/pdf/DICKERT-ETHICALGOALS.PDF

32. How Community Can Be Full Partners in the Research Process Additional Resources What does involving consumers in research mean? What does involving consumers in research mean? http://qjmed.oxfordjournals.org/cgi/reprint/94/12/661 Involving consumers in designing, conducting and interpreting randomised, controlled trials Involving consumers in designing, conducting and interpreting randomised, controlled trials http://bmj.bmjjournals.com/cgi/reprint/322/7285/519 Participatory research maximises community and lay involvement Participatory research maximises community and lay involvement http://bmj.bmjjournals.com/cgi/reprint/319/7212/774

33. How Community Can Be Full Partners in the Research Process Additional Resources Community-based Participatory Research: Policy and Recommendations for Promoting a Partnership Approach in Health Research Community-based Participatory Research: Policy and Recommendations for Promoting a Partnership Approach in Health Research http://depts.washington.edu/ccph/pdf_files/EducforHealthIsrael.pdf

34. How Community Can Be Full Partners in the Research Process Questions ?? stephan_oxendine2@yahoo.com