The Role of Community Engagement in Translational Research

The Role of Community Engagement in Translational

Research

Leo S. Morales, MD, PhDGroup Health Research Institute

Department of Health Services, UWCo-Director, Community Outreach and Research Translation Core, ITHS

ITHS BootcampSeptember 21, 2012

Translational Research Continuum

Basic Research

Basic Research

Early phase Clinical Trials

Early phase Clinical Trials

Later phase clinical trials

Later phase clinical trials

Community Practice

Community Practice CommunityCommunity

T1 T2 T3 T4

Translating discoveries into

treatments (phase 1 and 2 clinical trials)

Developing treatment

guidelines (phase 3 clinical trials)

Disseminating and

implementing evidence-based care in practices

Disseminating and

implementing evidence-based interventions in

communities

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.

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): 1929-1938.

Contrasting Research ParadigmsTraditional Research Community Engaged Research Community Based Participatory

Research

Research Objective

Investigators set the research agenda

Investigators set the research agenda with community input

Investigators and community set research agenda

Study Design Investigators design study

Investigators design study with community input

Investigators and community design study together

Recruitment Investigators determine recruitment strategies

Investigators select recruitment strategies with community input

Investigators and community select recruitment strategies

Data Collection Investigators 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 building

Analysis/Interpretation

Investigators conduct analyses and interpret data

Investigators conduct analyses and interpret data with community input

Investigators and community conduct analyses and interpret data.

Dissemination Peer-reviewed publications and scientific meetings

Peer-reviewed publications, scientific meetings and community presentations

Community members involved in all dissemination efforts including peer-reviewed publications.

Participation of Different Groups in Translational Research

Patients,Families,

Communities

Patients,Families,

Communities

Health Systems& Practices

Health Systems& Practices

Academic InvestigatorsAcademic Investigators

T1: Basic Research

T2, T3: Clinical Trials

T3, T4: Dissemination and ImplementationResearch

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. 2001 Dec;91(12):1926-9.

Principles of Community Engagement

• Have a clear statement of the purpose or goals of the engagement effort

• Define the community or population you wish to engage

• Become knowledgeable about the community or population you wish to engage

• Go to the community, establish relationships, build trust, and seek commitments from community organizations and leaders to move the engagement process forward

• Approach community members with humility and respect, recognizing the expertise and resources they can bring to a research project

Adapted from: Principles of Community Engagement, 2nd Edition, June 2011

Principles of Community Engagement

• Recognize that communities are diverse. Awareness of various factors affecting diversity must be considered when planning, designing and implementing community engagement

• Seek 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 community

• Be prepared to make long-term commitments to community partners

Adapted from: Principles of Community Engagement, 2nd Edition, June 2011

Community Engagement Continuum

Barriers to Community Participation in Research

• History of poor relationships with academic researchers– Topics of research not of interest– Results of research not shared with

community– Community members subjects of

experimentation • Limited time and resources for research• Limited experience proposing or

conducting research• Lack of tangible benefits to community

Barriers to Academic Participation in Community Engaged Research• Insufficient time to build relationships with

community members and organizations• Community engagement may not recognized or

rewarded by academic faculty• NIH funding is not suited to ongoing community

engagement– Long and uncertain application process– Project-based funding

• Communities may not be willing to wait for published articles to learn about the results of research

ITHS CORT (Community Outreach and Research Translation)

• Community Based Practice Research: UW Department of Family Medicine (Laura Mae Baldwin [email protected])

• American Indian/Alaskan Native Community Outreach: Partnership for Native Health (Dedra Buchwald [email protected])

• Hispanic Community Outreach: Group Health Research Institute (Leo Morales [email protected])

Resources for Learning More About Community Engagement

• Principles of Community Engagement, 2nd Edition, Clinical and Translational Science Awards Consortium

• Viswanathan, 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):S40-46

• Seifer, 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): 63-74.

• Office of Behavioral and Social Sciences Research, NIH (http://obssr.od.nih.gov/scientific_areas/methodology/community_based_participatory_research/index.aspx)

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. 2001 Dec;91(12):1926-9.