Translating Practice into Evidence: Community-Engaged Research

Why including community stakeholders in your research process improves both

science and health practice

Kevin Grumbach, MDEllen Goldstein, MA

Margaret Handley, PhD, MPH

Course Objectives Define the key principles of community-engaged

research. Describe the benefits of community-engaged

research for the scientific validity, impact, and ethical conduct of research.

Identify challenges to community engagement in research and strategies to overcome these challenges .

Apply the principles and methods of community-engaged research to the student’s own research program and integrate the methods in a practical manner into the protocol for a specific research project.

Epi 248 Course structure

Readings before each session Homework after each session: due Monday Combination of didactic presentations, panels,

full class and small group discussion Complete a Community Engagement Planning

Document by the end of the course Grades based on homework, participation, and

attendance

Definition of Community

A group of people Linked by social ties Sharing common perspectives or interests Who may or may not share a geographic location

Duke Center for Community Research

Could be clinicians, policymakers, community agency staff, neighbors, advocates…

What’s your project?Who is your community?

Who else?

NIH Roadmap

Long term planSets priorities for NIHEmphasizes strengthening linkages between

research and practiceEncourages improved communication and

cooperation between researchers and communities

Duke Center for Community Research

Definition of Community Engagement

• The Centers for Disease Control and Prevention (CDC) define community-engagement as:

“ the process of working collaboratively with and through groups of people affiliated by geographic proximity, special interest, or similar situations to address issues affecting the well-being of those people”

• Well-Established Models– Community-Based Participatory Research– Practice-Based Research Networks– But not limited to these “classic” models

Traditional ResearchResearchers identify problem orrespond to request for proposals

Develop research plan, select community & secure funds

Develop and implement intervention or data collection

Collect dataAnalyze data

Interpret data, write papers &disseminate results to the academic community

Duke Center for Community Research

Community-engaged Research

…is based on traditional research, and describes a continuum of types of participation by various types of

community stakeholders.

Community Engaged Research

Traditional Research Approach

Research with the community

Community-based Participatory

Research Approach

Researcher defines problem

Research IN the community, or WITH the community

Community identifies problem or works with

researcher to identify problem

Research IN or ON the community

Research WITH community as partner

Research WITH community as full

partner

People as subjects People as participants People as participants & collaborators

Community Engaged ResearchTraditional

Research ApproachResearch with the community

Community-based Participatory

Research Approach

Community organizations may assist

Community organizations may help recruit participants & serve on Advisory Board

Community organizations are

partners with researchers

Researchers gain skills & knowledge

Researchers gain skills & knowledge, some awareness of helping community develop skills

Researchers & community work

together to help build community capacity

Researchers control process, resources & data interpretation

Researchers control research, community representatives may help make minor decisions

Researcher & community share control

equally

Researchers own data, control use & dissemination

Researchers own the data & decide how it will be used & disseminated

Data is shared, researchers and

community decide its use and dissemination

Why Community Engagement?

Ethical, respectful and responsible relationships with study participants and the community

Better science

Better ScienceA Successful Research Study Needs: Good research questions Valid and feasible research design and methods Successful data collection Informed data analysis and interpretation Effective dissemination of results Translation into action, behavior change, and

improved health

Community Engagement: Research Question

Answers a question that emerges from practice or will matter to practice…

Balanced with theoretical and literature review approach.

Research Question Community input can result in relevant questions

that address important health issues Can the RQ answer the “So What?” question?

Community-informed questions respond to complex “real world” situations Will outcomes be valid when applied to practice

contexts?

A good research question is informed by how community members understand the health issue

Approaches to Engaging Community in Research Question Development

• Informal consultation, advice, feedback• Focus groups• More formal advisory committee• Being clear up front about ground rules:

– What about the research question(s) is open for discussion and modification?

– Expectations about time, compensation, power, and credit

Research Question

How might you involve your community in development or refinement of your research question?