Skills Building for Intervention and Research How Community Can Be Full Partners in the Research Process Stephan Oxendine, Facilitator Member, CAPS Community

Skills Building for Intervention and Skills Building for Intervention and ResearchResearch

How Community Can Be Full How Community Can Be Full Partners Partners

in the in the Research ProcessResearch Process

Stephan Oxendine, FacilitatorStephan Oxendine, FacilitatorMember, CAPS Community Advisory Board (2000-2005)Member, CAPS Community Advisory Board (2000-2005)



Workshop OutlineWorkshop Outline

I.I. Welcome and IntroductionWelcome and Introduction Presenter Introduction and BackgroundPresenter Introduction and Background Workshop Goals and ObjectivesWorkshop Goals and Objectives Packet ReviewPacket Review

II.II. Legacy of community participationLegacy of community participationIII.III. Principal Discussion (Interactive)Principal Discussion (Interactive)

Six questions and recommendationsSix questions and recommendationsIV.IV. Summaries of Lessons LearnedSummaries of Lessons Learned

Two perspectives (community and Two perspectives (community and research)research)

V.V. Q & A, Wrap Up and EvaluationQ & A, Wrap Up and Evaluation



Presenter Research CAB BackgroundPresenter Research CAB Background

San Francisco Department of Public Health, HIV San Francisco Department of Public Health, HIV Research Community Advisory BoardResearch Community Advisory Board – Member (1999- – Member (1999-

Center for AIDS Prevention Studies (CAPS)/USCF,Center for AIDS Prevention Studies (CAPS)/USCF, Community Advisory Board –Community Advisory Board – Member (2000-2005) Member (2000-2005)

HIV Vaccine Trials Network (HVTN), Phase III HIV Vaccine Trials Network (HVTN), Phase III CommitteeCommittee – Member (2001- – Member (2001-

Adult AIDS Clinical Trials Group (AACTG), Community Adult AIDS Clinical Trials Group (AACTG), Community Constituency Group (CCG)Constituency Group (CCG) – Member (2003-2004) – Member (2003-2004)

AIDS Community Research Consortium, Board of AIDS Community Research Consortium, Board of DirectorsDirectors – Member (2002-2004) – Member (2002-2004)

Office of AIDS Research (National Institutes of Office of AIDS Research (National Institutes of Health)Health) – Bethesda, MD - Community Consultant (2005) – Bethesda, MD - Community Consultant (2005)



Objective:Objective:To stimulate a focused and To stimulate a focused and robust dialogue on community robust dialogue on community participation in the research processparticipation in the research process

Goals:Goals: To raise the level of awareness, To raise the level of awareness, and to develop recommendations, for and to develop recommendations, for what may be required to achieve fully what may be required to achieve fully viable, demographically appropriate viable, demographically appropriate community partnerships with the community partnerships with the research processresearch process



Packet ReviewPacket Review

Overview of Research ProcessOverview of Research Process How to read a research paperHow to read a research paper Research methodologiesResearch methodologies Working Together – CAPS manualWorking Together – CAPS manual CAPS CAB Research Dissemination CAPS CAB Research Dissemination

BrochureBrochure Workshop SlidesWorkshop Slides EvaluationsEvaluations



““If you do what you have If you do what you have always done, you will get always done, you will get

what you have always what you have always gotten.”gotten.”

UnknownUnknown



Full Partnership in Research is Rooted in Full Partnership in Research is Rooted in Modern Area Social ActivismModern Area Social Activism

Black Civil Rights Movement (1950s - 1960s)Black Civil Rights Movement (1950s - 1960s) Counter Culture Counter Culture ➟ ➟ Anti-War Movement (1960s - Anti-War Movement (1960s -

1970s)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 Current Status: Presence of Community Advisory Boards on all NIH funded research - and other DHHS - endeavorsall NIH funded research - and other DHHS - endeavors



I.I. What is the primary objective of What is the primary objective of any research endeavor?any research endeavor?



II.II. Is it important for community to Is it important for community to participate in the research participate in the research process?process? If so, why and how?If so, why and how? If not, why not?If not, why not?

RecommendationsRecommendations



III.III. Does community have Does community have responsibilities while participating responsibilities while participating in the research process?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 How does one prepare to successfully

participate in the research process? participate in the research process?




IV.IV. Does research have responsibilities Does research have responsibilities with respect to community with respect to community participation in the research participation in the research process? process? If so, what are they and whyIf so, what are they and why If not, why not?If not, why not?




V.V. How should community use the How should community use the research process?research process? ParticipationParticipation FindingsFindings




VI.VI. What must CABs do to ensure What must CABs do to ensure their continued viability?their continued viability?

(Any areas not covered in prior discussion)(Any areas not covered in prior discussion)




Summary of Lessons Learned:Summary of Lessons Learned:

Community Presenter’s Community Presenter’s PerspectivePerspective



Lessons Learned - CommunityLessons Learned - Community

1.1. CABS are not clubs. CABs can, CABS are not clubs. CABs can, and should, be an integral part of and should, be an integral part of the process of conducting the process of conducting decisive, relevant and potentially decisive, relevant and potentially life-altering, life-sustaining & life-life-altering, life-sustaining & life-saving research.saving research.




2.2. Community Community cancan accrue a detailed accrue a detailed understanding of the research understanding of the research process.process. Understanding and functioning as an Understanding and functioning as an

integral part of the research process is a integral part of the research process is a acquired skill set based on a tiered acquired skill set based on a tiered learning process and requires diligence learning process and requires diligence and patience to achieve.and patience to achieve.




3.3. Community possesses genuinely Community possesses genuinely viable perspectives. Those viable perspectives. Those perspectives, applied judiciously, perspectives, applied judiciously, constitute a valuable contributionconstitute a valuable contribution Community input into the research Community input into the research

process must be proactiveprocess must be proactive The research process cannot read our The research process cannot read our

minds – nor should it. minds – nor should it.




4.4. Community can, and must, Community can, and must, monitor the integrity of the monitor the integrity of the research process in terms of:research process in terms of: Relevance/Viability (The So-What? Relevance/Viability (The So-What?

Question)Question) Structure and methodologyStructure and methodology EthicsEthics




5.5. CABs can, and should, assume a CABs can, and should, assume a greater role in educating their greater role in educating their communities, both respectively communities, both respectively and generally, as regards an and generally, as regards an understanding of, and understanding of, and participation in, the research participation in, the research process. process.




6.6. Responsibility for participation by Responsibility for participation by community in the research community in the research process is mutually incumbent.process is mutually incumbent. The research process, while it should The research process, while it should

always endeavor to do so, may not always endeavor to do so, may not always succeed in ascertaining always succeed in ascertaining appropriate community perspectives.appropriate community perspectives.

Community must also seek out the Community must also seek out the research processresearch process

Neither can afford to stand on ceremonyNeither can afford to stand on ceremony




7.7. Optimal community partnerships Optimal community partnerships with the research process require with the research process require unmitigated support and unmitigated support and cooperation by the Principal cooperation by the Principal Investigator(s), their respective Investigator(s), their respective staffs and, ideally, the associated staffs and, ideally, the associated research institution.research institution.




8.8. Generally speaking, the research Generally speaking, the research process is ultimately more process is ultimately more relevant and efficient, and the relevant and efficient, and the findings may accrue in a far more findings may accrue in a far more beneficial manner, if community is beneficial manner, if community is involved as early in the process as involved as early in the process as is possible.is possible.




9.9. The research process has The research process has confirmed HIV as a public health confirmed HIV as a public health phenomenon that must be phenomenon that must be approached in the broad light of approached in the broad light of its empirically-based, sociological its empirically-based, sociological context and that we ALL have a context and that we ALL have a role to play. role to play.

Lessons Learned:Lessons Learned:Researcher’s PerspectiveResearcher’s Perspective

Tri Do, MD, MPHTri Do, MD, MPHAssistant Professor of MedicineAssistant Professor of Medicine

UCSF Center for AIDS Prevention StudiesUCSF Center for AIDS Prevention Studies



I.I. Community partners – whether they Community partners – whether they are community advisory board are community advisory board members, community agencies, or members, community agencies, or research participants from a research participants from a population of interest – can enhance population of interest – can enhance the quality any research program.the quality any research program.

Understand the importance of Understand the importance of community stakeholders in the community stakeholders in the research process.research process.

Learn to value and respect their input.Learn to value and respect their input. NIH Reviewers often want to see NIH Reviewers often want to see

community involvement in some form.community involvement in some form.



II.II. The nature and potential impact of the The nature and potential impact of the research, as well as the characteristics of research, as well as the characteristics of the community itself, should guide the community itself, should guide decisions on the development of a decisions on the development of a community input process.community input process.

For community-based research, consider creating For community-based research, consider creating formal relationships with community partner agencies.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 Talk to other researchers who have experience with a

given community about what structure makes the given community about what structure makes the most sense.most sense.

Make no assumptions about what makes the most Make no assumptions about what makes the most sense. sense.



III.III. Rely on and place trust in informal Rely on and place trust in informal conversations with community stakeholders conversations with community stakeholders to learn about the community before to learn about the community before formally engaging the community.formally engaging the community.

Every community is different and may not be based on Every community is different and may not be based on those characteristics you might think are defining those characteristics you might think are defining attributes.attributes.

Your sense of the purpose in engaging the community Your sense of the purpose in engaging the community will evolve as a result of these early conversations.will evolve as a result of these early conversations.

The formal process of engaging the community will also The formal process of engaging the community will also become apparent over time and is an iterative activity.become apparent over time and is an iterative activity.



IV.IV. Be clear in your own mind about the Be clear in your own mind about the purpose of engaging the community.purpose of engaging the community.

Development of a research agendaDevelopment of a research agenda Refinement of a set of research questionsRefinement of a set of research questions Outreaching to community as research Outreaching to community as research

participantsparticipants Review of research methods and ethical issuesReview of research methods and ethical issues Dissemination of research findings and Dissemination of research findings and

translation into broader settingstranslation into broader settings

One size does not fit allOne size does not fit all



V.V. Devote resources for community-related Devote resources for community-related activities in your budgets and even activities in your budgets and even while developing research ideas.while developing research ideas.

Make time for conversations with community Make time for conversations with community stakeholders, in the absence of secured funding.stakeholders, in the absence of secured funding.

Job descriptions of key staff and scientists should Job descriptions of key staff and scientists should include community-related activities.include community-related activities.

Describe key activities where your study Describe key activities where your study interfaces the community in grant proposals and interfaces the community in grant proposals and budget appropriately.budget appropriately.



VI.VI. Follow through on the plan for Follow through on the plan for community engagement.community engagement.

Selection of community members/partners should Selection of community members/partners should involve a highly formal process.involve a highly formal process.

Begin any new engagement with an outlining of Begin any new engagement with an outlining of your scientific goals and detailed discussion of the your scientific goals and detailed discussion of the process of community engagement.process of community engagement.

Be clear about your reason for engaging the Be clear about your reason for engaging the community – their time and resources are not community – their time and resources are not unlimited.unlimited.




in the in the Research ProcessResearch ProcessAdditional ResourcesAdditional Resources

Observational Research MethodsObservational Research Methodshttp://emj.bmjjournals.com/cgi/reprint/20/1/54http://emj.bmjjournals.com/cgi/reprint/20/1/54

Overview of Research DesignsOverview of Research Designshttp://emj.bmjjournals.com/cgi/reprint/19/6/546http://emj.bmjjournals.com/cgi/reprint/19/6/546

Ethical Goals of Community Consultation in Ethical Goals of Community Consultation in ResearchResearchhttp://www.nswp.org/pdf/DICKERT-ETHICALGOALS.PDFhttp://www.nswp.org/pdf/DICKERT-ETHICALGOALS.PDF



What does involving consumers in research What does involving consumers in research mean?mean?http://qjmed.oxfordjournals.org/cgi/reprint/94/12/661http://qjmed.oxfordjournals.org/cgi/reprint/94/12/661

Involving consumers in designing, conducting Involving consumers in designing, conducting and interpreting randomised, controlled trialsand interpreting randomised, controlled trialshttp://bmj.bmjjournals.com/cgi/reprint/322/7285/519http://bmj.bmjjournals.com/cgi/reprint/322/7285/519

Participatory research maximises community Participatory research maximises community and lay involvementand lay involvementhttp://bmj.bmjjournals.com/cgi/reprint/319/7212/774http://bmj.bmjjournals.com/cgi/reprint/319/7212/774



Community-based Participatory Research: Community-based Participatory Research: Policy and Recommendations for Promoting a Policy and Recommendations for Promoting a Partnership Approach in Health ResearchPartnership Approach in Health Research

http://depts.washington.edu/ccph/pdf_files/EducforHealthIsrahttp://depts.washington.edu/ccph/pdf_files/EducforHealthIsrael.pdfel.pdf



Questions ??Questions ??

[email protected][email protected]

Documents

Skills Building for Intervention and Research How Community Can Be Full Partners in the Research Process Stephan Oxendine, Facilitator Member, CAPS Community