Evaluating the Impact and Effectiveness of Flint's Community Ethics Review Board (CBOP-CERB): A Pilot Study.

In recognition of the importance of evaluation for funding, research, and quality improvement, a longstanding Community Advisory Board in Flint Michigan embarked on a process to evaluate their impact. The Community-Based Organization Partners (CBOP)-Community Ethics Review Board (CERB) engaged a research team composed of an academic researcher (Solomon Cargill) and a community partner (Spencer) to obtain funding, design and implement an evaluation of the CBOP-CERB. This evaluation study yielded two evaluations of the CBOP-CERB, one with researchers who had engaged with the CBOP-CERB and the other with Flint area community residents. The results of these two evaluations can serve to show other Community Advisory Boards how to establish and expand their impact, establish their worth for future funding, and how to articulate, evaluate, and achieve their goals.

Challenges and Lessons from Conducting a Community-Engaged Evaluation of a Community Advisory Board-A Case Study from Flint.

Community-engaged research often poses challenges due to exactly those qualities that make it desirable: it provides a new model of research that differs in many ways from top-down, university-led, prospectively designed approaches. While many have discussed the challenges to conducting community-engaged research, few have provided precise and generalizable lessons for how to surmount these challenges. Here we discuss the challenges experienced in a project that was community-engaged at three levels: 1) a research team consisting of an academic and a community partner as well as a community and academic research assistant, 2) the research team engaged with a Community Advisory Board called the CBOP-CERB (Community Based Organization Partners-Community Ethics Research Board) throughout the project, and 3) the research involved recruiting community participants from an area with a historical distrust of researchers and research: Flint Michigan. We also discuss administrative challenges that this multilevel community-engagement posed. Most important, we provide practical lessons in order for future community-engaged research to avoid or mitigate many of these challenges.

How Do We Really Communicate? Challenging the Assumptions behind Informed Consent Interventions.

It is generally accepted that ethical research requires valid informed consent and that current informed consent practice frequently fails to attain it. Interventions concerning the content and methods of communication in informed consent have met with limited success. One explanation is that they reflect an outdated and limited model of how communication functions, the transmission model of communication. This model assumes that communication is linear, is limited in time, and succeeds when the content of a message is passed from one person to another without distortion. Later communication models have challenged the limitations and inaccuracies of this model, emphasizing the continuous, contextual, and relational nature of communication. Looking beyond these assumptions behind current interventions can open multiple paths of research and intervention that have the potential to affect and improve the informed consent process in much greater ways than have been achieved previously.

Show me the money! An analysis of underserved stakeholders' funding priorities in Patient Centered Outcomes Research domains.

AIM: Develop an accessible exercise to engage underserved populations about research funding priorities; analyze the criteria they use to prioritize research; contrast these criteria to those currently used by Patient Centered Outcomes Research Institute (PCORI). MATERIALS & METHODS: Academic and community partners collaborated to develop an Ipad exercise to facilitate group deliberation about PCOR funding priorities. 16 groups (n = 183) of underserved individuals in both urban and rural areas participated. Recordings were qualitatively analyzed for prioritization criteria. RESULTS: Analysis yielded ten codes, many of which were similar to PCORI criteria, but all of which challenged or illuminated these criteria. CONCLUSION: Directly involving underserved populations in determining funding criteria is both feasible and important, and can better fulfill PCORI's goal of incorporating patient priorities.

Priorities for Patient-Centered Outcomes Research: The Views of Minority and Underserved Communities.

OBJECTIVE: To learn how minority and underserved communities would set priorities for patient-centered outcomes research (PCOR). DATA SOURCES: Sixteen groups (n = 183) from minority and underserved communities in two states deliberated about PCOR priorities using the simulation exercise CHoosing All Together (CHAT). Most participants were minority, one-third reported income <$10,000, and one-fourth reported fair/poor health. DESIGN: Academic-community partnerships adapted CHAT for PCOR priority setting using existing research agendas and interviews with community leaders, clinicians, and key informants. DATA COLLECTION: Tablet-based CHAT collected demographic information, individual priorities before and after group deliberation, and groups' priorities. PRINCIPAL FINDINGS: Individuals and groups prioritized research on Quality of Life, Patient-Doctor, Access, Special Needs, and (by total resources spent) Compare Approaches. Those with less than a high school education were less likely to prioritize New Approaches, Patient-Doctor, Quality of Life, and Families/Caregivers. Blacks were less likely to prioritize research on Causes of Disease, New Approaches, and Compare Approaches than whites. Compare Approaches, Special Needs, Access, and Families/Caregivers were significantly more likely to be selected by individuals after compared to before deliberation. CONCLUSIONS: Members of underserved communities, in informed deliberations, prioritized research on Quality of Life, Patient-Doctor, Special Needs, Access, and Compare Approaches.