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

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

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.

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

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

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)

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

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

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

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 Need example for “not” case

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

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 1947-2008

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 participants People as participants & collaborators

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

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

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.

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.

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.

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