Presentation on theme: "The Role of Community Engagement in Translational Research"— Presentation transcript:
1 The Role of Community Engagement in Translational Research ITHS BootcampSeptember 21, 2012Leo S. Morales, MD, PhDGroup Health Research InstituteDepartment of Health Services, UWCo-Director, Community Outreach and Research Translation Core, ITHS
2 Translational Research Continuum Basic ResearchEarly phase Clinical TrialsLater phase clinical trialsCommunity PracticeCommunityTranslating discoveries into treatments (phase 1 and 2 clinical trials)Developing treatment guidelines (phase 3 clinical trials)Disseminating and implementing evidence-based care in practicesDisseminating and implementing evidence-based interventions in communities
3 What is Community Engaged Research? Community-engaged research is a framework or approach for conducting research that entails involving users of the research and other stakeholders in the formulation as well as the application of the research. A wide range of research methods—epidemiologic, experimental, survey, focus-group, qualitative interview—can be applied in the service of participatory research. The choice depends on the methods called for by the research questions and the feasibility of the methods in the particular circumstances.
4 What is a Community?A group of people with diverse characteristics who are linked by social ties, shared perspectives, and engage in joint action in geographical locations or settings.Source: MacQueen KM, McLellan E, Metzger DS, Kegeles S, Strauss RP, Scotti R, Blanchard L, Trotter RT. What Is Community? An Evidence-Based Definition for Participatory Public Health. American Journal of Public Health. 2001; 91(12):
5 Contrasting Research Paradigms Traditional ResearchCommunity Engaged ResearchCommunity Based Participatory ResearchResearch ObjectiveInvestigators set the research agendaInvestigators set the research agenda with community inputInvestigators and community set research agendaStudy DesignInvestigators design studyInvestigators design study with community inputInvestigators and community design study togetherRecruitmentInvestigators determine recruitment strategiesInvestigators select recruitment strategies with community inputInvestigators and community select recruitment strategiesData CollectionInvestigators select data collection strategies.Investigators select data collection strategies with community input. Community members assist with some aspects of data collection.Investigators and community select data collection strategies. Community members collect data - focus on capacity buildingAnalysis/InterpretationInvestigators conduct analyses and interpret dataInvestigators conduct analyses and interpret data with community inputInvestigators and community conduct analyses and interpret data.DisseminationPeer-reviewed publications and scientific meetingsPeer-reviewed publications, scientific meetings and community presentationsCommunity members involved in all dissemination efforts including peer-reviewed publications.
6 Participation of Different Groups in Translational Research Patients,Families, CommunitiesAcademic InvestigatorsT1: Basic ResearchHealth Systems& PracticesT2, T3: Clinical TrialsT3, T4: Disseminationand ImplementationResearch
7 Degree of Participation by Stakeholders by Type of Research Source: Green LW, Mercer SL. Can public health researchers and agencies reconcile the push from funding bodies and the pull from communities? Am J Public Health Dec;91(12):
8 Principles of Community Engagement Have a clear statement of the purpose or goals of the engagement effortDefine the community or population you wish to engageBecome knowledgeable about the community or population you wish to engageGo to the community, establish relationships, build trust, and seek commitments from community organizations and leaders to move the engagement process forwardApproach community members with humility and respect, recognizing the expertise and resources they can bring to a research projectAdapted from: Principles of Community Engagement, 2nd Edition, June 2011
9 Principles of Community Engagement Recognize that communities are diverse. Awareness of various factors affecting diversity must be considered when planning, designing and implementing community engagementSeek to identify and mobilize community assets and develop a community’s capacity to make decisions and take action (build social capital)Be prepared to adapt your methods and interventions to meet the needs of the communityBe prepared to make long-term commitments to community partnersAdapted from: Principles of Community Engagement, 2nd Edition, June 2011
11 Barriers to Community Participation in Research History of poor relationships with academic researchersTopics of research not of interestResults of research not shared with communityCommunity members subjects of experimentationLimited time and resources for researchLimited experience proposing or conducting researchLack of tangible benefits to community
12 Barriers to Academic Participation in Community Engaged Research Insufficient time to build relationships with community members and organizationsCommunity engagement may not recognized or rewarded by academic facultyNIH funding is not suited to ongoing community engagementLong and uncertain application processProject-based fundingCommunities may not be willing to wait for published articles to learn about the results of research
13 ITHS CORT (Community Outreach and Research Translation) Community Based Practice Research: UW Department of Family Medicine (Laura Mae BaldwinAmerican Indian/Alaskan Native Community Outreach: Partnership for Native Health (Dedra BuchwaldHispanic Community Outreach: Group Health Research Institute (Leo Morales
14 Resources for Learning More About Community Engagement Principles of Community Engagement, 2nd Edition, Clinical and Translational Science Awards ConsortiumViswanathan, M., Ammerman, A., Eng, E., et al., (eds). (2004). Community-Based Participatory Research: Assessing the Evidence. Rockville, MD: Agency for Healthcare Research and Quality. Minkler, M. and Wallerstein, N. (eds). (2008). Community-Based Participatory Research for Health: From Process to Outcomes (2nd edition). San Francisco, CA: Jossey-Bass. Research Toolkit (http://www.researchtoolkit.org/)Israel, B., Eng, E., Schulz. A., et al., (eds). (2005). Methods in community-based participatory research for health. San Francisco, CA: Jossey-Bass. Wallerstein N, Duran B Community-based participatory research contributions to intervention research: the intersection of science and practice to improve health equity American Journal of Public Health 2010;100(Suppl 1):S40-46Seifer, S.D. and Calleson, D.C. (2004). Faculty perspectives on community-based research in academic health centers: Implications for policy and practice. Journal of Interprofessional Care. 18(4): Office of Behavioral and Social Sciences Research, NIH (http://obssr.od.nih.gov/scientific_areas/methodology/community_based_participatory_research/index.aspx)
15 Levels of Participation of Different Groups in Participatory Research Source: Green LW, Mercer SL. Can public health researchers and agencies reconcile the push from funding bodies and the pull from communities? Am J Public Health Dec;91(12):