1. 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, MD
Ellen Goldstein, MA
Margaret Handley, PhD, MPH

2. 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
Defining community

3. Why Community Engagement?
Ethical, respectful and responsible relationships with study participants and the community
Better science
Ethics: “subjects” vs “participants”
Efficacious interventions that are ineffective when implemented lack external validity, and are not actually good science.
Theoretically effective programs that are ineffective or unrealistic when implemented waste time and funding.
Community-partnered research requires more creative methods that account for more variables, creating more appropriate models for population research and is therefore more rigorous than the standard application of medical research models to non-medical settings.

4. Better Science A 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
Explain that rest of presentation will examine examples of CE in each of these domains

5. 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
Complements development of RQ using theoretical and literature review approach, which is what tends to be emphasized in academics; not either/or proposition

6. Research Question: Case Studies
Community engaged
Lead study
After-school obesity intervention
Not as community engaged
HIV prevention middle school intervention
Lead: FP question was how to counsel patients on lead toxicity, not initially about incidence and why of exposure
Pediatrician K awardee (Kirsten Madsen)

7. Methods Design Participants Data collection Intervention
Qualitative/ quantitative, cross-sectional/ longitudinal, case-control, RCT, etc.
Participants
Representativeness
Recruitment
Data collection
Instruments, strategies
Intervention
Emphasize research designs to measure the essential program, not just what’s easy to measure.
Have realistic expectations for community research, funding level, time limitations. Emphasize:
Formative
Process
Feasibility
Theory/measure development research
Implementation research

8. 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
? Bullet 3

9. Design: Case Studies Community-engaged Not as Community-engaged
Flu shot-FOBT study
Not as Community-engaged
Peer education randomization
Flu-FOBT: randomized at level of flu shot clinic days, not indiv patients; scaling up with staggered implementation

10. 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.

11. Participants: Case studies
Community-engaged
UFO retention
BVHP household survey
Not as community-engaged
Community clinic informed consent and enrollment

12. Data Collection
Can data be collected in practice/ real world settings?
Are instruments culturally sensitive and relevant?
Are measures valid for community?

13. Data Collection: Case Studies
Community-engaged
Church-based peer educator cards
BVHP questionnaire
URI and antibiotics questionnaire
Not as community-engaged
Lumbar puncture

14. 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.

15. Intervention: Case studies
Community-engaged
Charlotte Maxwell end of life study
Flu vax-FOBT
Not as community-engaged
HIV prevention with pre-existing groups
Need example for “not” case

16. 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.

17. Analysis: Case Studies
Community-engaged
Latino gay men’s study
BVHP study
Less community-engaged
MRSA study

18. 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.
Flexibility in resources, research questions, methods
Maintain channels of communication: newsletters, updates

19. 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 Francisco

20. Dissemination: Case Studies
Community-engaged
Lead
Immigration judges
Less community-engaged
MRSA

21. 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

22. Community Engaged Research
A continuum of engagement, not an all-or none proposition

23. 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

24. Community Engaged Research
Traditional Research Approach
Research 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

25. Relationships Matter
Time invested in building authentic relationships can save lots of frustration, grief and wasted time

26. Challenges of Community Engaged Research
Time
Relationships add complexity
Politics
Control
Academic culture and rewards

27. CCPH Principles of Partnership
Partnerships form to serve a specific purpose and may take on new goals over time.
Partners have agreed upon mission, values, goals, measurable outcomes and accountability for the partnership.
The relationship between partners is characterized by mutual trust, respect, genuineness, and commitment.
The partnership builds upon identified strengths and assets, but also works to address needs and increase capacity of all partners.

28. CCHP Principles, cont.
The partnership balances power among partners and enables resources among partners to be shared.
Partners make clear and open communication an ongoing priority by striving to understand each other's needs and self-interests, and developing a common language.
Principles and processes for the partnership are established with the input and agreement of all partners, especially for decision-making and conflict resolution.

29. CCPH Principles, cont.
There is feedback among all stakeholders in the partnership, with the goal of continuously improving the partnership and its outcomes.
Partners share the benefits of the partnership's accomplishments.
Partnerships can dissolve and need to plan a process for closure.

30. 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.

31. CTSI Community Engagement Program
(415)