Developed through the APTR Initiative to Enhance Prevention and Population Health Education in collaboration with the Brody School of Medicine at East Carolina University with funding from the Centers for Disease Control and Prevention Community-engaged Research

APTR wishes to acknowledge the following individuals who developed this module:  Anh Tran, PhD, MPH Duke University School of Medicine, Department of Community & Family Medicine Duke Center for Community Research  Victoria S. Kaprielian, MD, FAAFP Duke University School of Medicine, Department of Community & Family Medicine  Mary Anne McDonald, MA, DrPH Duke University School of Medicine, Department of Community & Family Medicine Duke Center for Community Research This education module is made possible through the Centers for Disease Control and Prevention (CDC) and the Association for Prevention Teaching and Research (APTR) Cooperative Agreement, No. 5U50CD The module represents the opinions of the author(s) and does not necessarily represent the views of the Centers for Disease Control and Prevention or the Association for Prevention Teaching and Research.

1. Identify the historical and philosophical basis of community-engaged research (CEnR). 2. Describe the principles of CEnR. 3. List the differences between a traditional research approach and a CEnR approach. 4. Discuss how research can benefit from collaboration between researcher and community. 5. Explain how CEnR exists on a continuum.

Framework/approach for conducting research Used with both qualitative and quantitative methods Recognizes and builds on community strengths Characterized by principles that guide research Requires partnership development

 Many different ways to conduct medical/health research in communities, and CEnR is one of them.  Over the past few decades, community engaged approach has been used more widely in both domestic and international health promotion and research programs.

 Empowerment education  Equality and co-learning  Community problem solving  Different theories with valid views on what is being observed  Role and experience of the observer

(CDC/ATSDR Committee on Community Engagement, 1997) Differences between a traditional research approach and a community-engaged approach Elements of community-based participatory research (CBPR) How community-engaged research exists on a continuum

Researchers Communities

Common Language for Community Engagement I’m recruiting participants for a study….. What’s Said:What’s Heard: They just want to take advantage of me.. Maybe I can gain new information about my health… Will this make our neighborhood look bad? What if my employer finds out….

Researchers Communities Being the subject of research is different from being a participant in research Communities

Researchers identify research question or respond to request for proposals Develop research plan, select community & secure funds Develop & implement intervention Collect data Interpret data, write papers & disseminate results Analyze data Traditional Research Process

Data is shared, researchers and community decide its use and dissemination Researchers own the data & decide how it will be used & disseminated Researchers own data, control use & dissemination Researcher & community share control equally Researchers control research, community representatives may help make minor decisions Researchers control process, resources & data interpretation Researchers & community work together to help build community capacity Researchers gain skills & knowledge, some awareness of helping community develop skills Researchers gain skills & knowledge Community organizations are partners with researchers Community organizations may help recruit participants & serve on Advisory Board Community organizations may assist People as participants & collaborators People as participantsPeople as subjects Research WITH community as full partner Research IN the community, or WITH the community Research IN or ON the community Community identifies problem or works with researcher to identify problem Researcher defines problem, community may contribute Researcher defines problem Community-based Participatory Research Approach Research with the community Community-engaged Research (CEnR) Traditional Research Approach Research WITH community as partner

 Understand community context/geography  Respect social customs  Respect cultural beliefs and behaviors  Recognize that people communicate differently  Be approachable  Observe community etiquette  Work towards becoming culturally competent

 Is a collaborative approach to research  Involves all partners equitably in the research process  Recognizes unique strengths that each brings  Finds a research topic important to the community  Combines knowledge with action Ultimately, CBPR aims to improve health outcomes and eliminate health disparities.

 Communities identify problems  Communities develop solutions  Shared decision making power  Shared dissemination of data Building a strong partnership takes time, attention and reflection

 Researchers can develop questions about health issues of concern to the community  Results likely to be translatable  Community partnerships can help participant recruitment  Community understanding can bring community support

 Can improve the reliability and validity of:  Measurement tools  Questions and study procedures  Can inform about community interpretations of research results

 Epidemiological or descriptive studies  Evidence-based practice  Evaluation or practice-based evidence

How does the researcher role differ in CEnR compared to traditional research? How can projects include some principles of community-engaged research (CEnR)?

1. Problem identification 2. Community selected, research plan developed, and funds secured 3. Begin study in community 4. Develop and implement intervention or data Collection process 5. Collect data 6. Analyze data 7. Report and disseminate results

 Community members may approach researchers OR  Researchers may approach community with a proposal for research

 Researchers may handle all these steps OR  Community organizations may contribute  Research questions  Ideas on recruitment  Advice on logistics  Suggest other collaborating organizations  Advice on how to tailor for the community context

 Control groups  Different treatments or interventions provided to groups  Random assignment of participants © Duke Translational Medicine Institute

 Share drafts of the research proposal with community partners OR co-author proposal with them  Include funding for the work of community partners  Share information on the project budget

 Does not need to include explicitly ethical concerns  Can specify organizational and community level risks and benefits  Detail how researchers and community organizations will work together  Establish how decisions will be made © Duke Translational Medicine Institute

 Need IRB approval for project  Need for community partners to be trained on protection of human subjects  Need for IRBs to be familiar with nature of CEnR projects

 Organizations for members of ethnic or language groups  Native American Tribal Organizations  County Health Departments  School Boards © Duke Translational Medicine Institute

Involve community members as:  Project staff - in the office or in the field  Advisors/Consultants Involvement helps with:  Recruitment and retention  Community buy-in

Community partners can:  Help tailor the intervention  Help tailor the data collection process  Advise on problems  Promote the study in the community  Collect community’s responses

Community members can be hired to:  Administer questionnaires  Log participation  Read measurements  Make observations

 Community staff can assist in activities such as data cleaning

Community may want to use  Meetings  Radio programs  Newspaper articles Researchers need to discuss how and when to present findings in the community

Community members and partner organizations should: Receive credit for their contributions Be included in press conferences Attend and present at meetings, if possible Be considered for inclusion as co-authors in papers

 CEnR approach encompasses a range of possibilities for research conducted with community partner participation.  CenR approach has potential to yield more meaningful and translatable findings.

 Department of Public Health Brody School of Medicine at East Carolina University  Center for Public Health Continuing Education University at Albany School of Public Health

Mike Barry, CAE Lorrie Basnight, MD Nancy Bennett, MD, MS Ruth Gaare Bernheim, JD, MPH Amber Berrian, MPH James Cawley, MPH, PA-C Jack Dillenberg, DDS, MPH Kristine Gebbie, RN, DrPH Asim Jani, MD, MPH, FACP Denise Koo, MD, MPH Suzanne Lazorick, MD, MPH Rika Maeshiro, MD, MPH Dan Mareck, MD Steve McCurdy, MD, MPH Susan M. Meyer, PhD Sallie Rixey, MD, MEd Nawraz Shawir, MBBS

 Sharon Hull, MD, MPH President  Allison L. Lewis Executive Director  O. Kent Nordvig, MEd Project Representative