Community-Engaged Research

…With tales of success and failures based on making good use of, or alternately ignoring the value of working with the people whose behavior and practices you hope to support or change…

Kevin Grumbach, MDEllen Goldstein, MA

Margaret Handley, PhD, MPH

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

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

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

Research Question: Case Studies

• Community engaged– Lead study – After-school obesity intervention

• Not as community engaged– HIV prevention middle school intervention

Methods

• Design– Qualitative/ quantitative, cross-sectional/ longitudinal,

case-control, RCT, etc.

• Participants– Representativeness– Recruitment

• Data collection – Instruments, strategies

• Intervention

Design

• Design must be – feasible to execute within the context of community

practice– acceptable to providers and participants

• Design must take into account the burden on participants and research setting

• Design itself may positively or negatively impact intervention and outcomes being studied

Design: Case Studies

• Community-engaged– Flu shot-FOBT study

• Not as Community-engaged– Peer education randomization

Participants

• For good science, you need research participants willing to participate in the study and accept the intervention.

• Community members can help identify and recruit participants representative of those bearing the burden of the health issue and explore heterogeneity of effects across populations.

Participants: Case studies

• Community-engaged– UFO retention– BVHP household survey

• Not as community-engaged– Community clinic informed consent and

enrollment

Data Collection

• Can data be collected in practice/ real world settings?

• Are instruments culturally sensitive and relevant?

• Are measures valid for community?

Data Collection: Case Studies

• Community-engaged– Church-based peer educator cards– BVHP questionnaire– URI and antibiotics questionnaire

• Not as community-engaged– Lumbar puncture

Intervention

• Community engagement can help an intervention to:– take into account issues of context, complexity,

culture, etc.– address priorities of providers and community

members– be feasible and sustainable in “real world”

settings.

Intervention: Case studies

• Community-engaged– Charlotte Maxwell end of life study– Flu vax-FOBT

• Not as community-engaged– HIV prevention with pre-existing groups

Analysis/interpretation

• Community stakeholders can suggest analyses and review data for possible alternate interpretations.

• Community research partners can report if results make sense to them.

Analysis: Case Studies

• Community-engaged– Latino gay men’s study– BVHP study

• Less community-engaged– MRSA study

Dissemination

• Responsible dissemination includes disseminating findings with: study participants, recruitment sites, key stakeholders, policymakers.

• Sharing results with key stakeholders often requires understanding how they best receive information.

Communities, especially underserved communities, are often “subjects” of research that doesn’t benefit them.

“I have given you my blood, my semen, my saliva and my urine.I have spent hours with you answering intimate question about my sex life, my drug use, my health and my partners and friends.In return, I ask that you simply tell me what you learned.”-Hank Wilson, Activist, San Francisco1947-2008

Dissemination: Case Studies

• Community-engaged– Lead – Immigration judges

• Less community-engaged– MRSA

Implementation and Scaling Up

• From trials of efficacy to broader translation: – Effectiveness– Reach – Sustainability

• Glasgow RE-AIM framework

• Translation into policy and systems changes

• Process of implementation is itself a researchable subject

Community Engaged Research

• A continuum of engagement, not an all-or none proposition

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 participantsPeople 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

Relationships Matter

• Time invested in building authentic relationships can save lots of frustration, grief and wasted time

Challenges of Community Engaged Research

• Time

• Relationships add complexity

• Politics

• Control

• Academic culture and rewards

Take Home Points

• Community engagement requires consideration of community input in all phases of research.

• Community engagement is not an all or none process, but a continuum of options

• Community engagement improves internal and external validity of research.

• Community engagement promotes translation of research findings to improve health.

CTSI Community Engagement Program

• http://ctsi.ucsf.edu/

• cep@fcm.ucsf.edu

• (415) 206--5611