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

Evaluating the Impact and Effectiveness of Flint's Community Ethics Review Board (CBOP-CERB):A Pilot Study Stephanie Solomon Cargill, PhD, MSPH, Bryan Spencer, MHSA, CPS, and Briah Spencer, BA What Is the Purpose of this Study? • The purpose of this study is to evaluate the impact of a Community Advisory Board, called the Community Ethics Research Board (CERB) in Flint, Michigan. A community collaborative, Community Based Organization Partners (CBOP) formed the CERB in 2009, and in 2016 it grew even more due to the Flint water crisis. In spite of its importance in Flint, the CERB struggles for recognition and funding so that it can continue to serve and improve research for the Flint community. What Is the Problem? • Although many find community advisory boards that voice community priorities and concerns important, they frequently lack funding or are often not required as part of the research enterprise. Demonstrating evidence of impact is critical to obtaining funding, and this led the CERB to create and conduct an evaluation of themselves from the perspective of their two primary stakeholders: Researchers whose studies were reviewed by the CERB and the Flint community. This study piloted evaluations with both of these groups: an anonymous survey evaluation with researchers who had used the CERB and focus groups with diverse members of the Flint community. What Are the findings? Researcher evaluation • Out of 36 invited researchers, 27 participated (75%): The survey asked researchers why they initially submitted their research to CERB review. Most researchers who used the CERB did it because they already thought engagement was important. This leaves room for growth for researchers to either be referred or required to use the CERB who may not consider it relevant but can be convinced or incentivized to do so by other sources (community members on research team, grants, academic researchers who see its importance, etc.). • Next we asked at what stage of the research the CERB reviewed their studies: While most researchers had their research reviewed prior to starting the research (92%) very little research was reviewed by the CERB once it began. This leaves room for growth for revisiting the CERB during and after the research to receive continuous input in response to realities on the ground. • We evaluated several aspects of the CERB process, which include an intake form, a face-to-face meeting involving a presentation and Q&A, and feedback. The feedback on the process was predominately very positive, with some helpful suggestions for improvement including written (in addition to verbal) feedback, and more follow-up and interaction after the review. • The rest of the survey evaluated the impact of the survey on research. We asked researchers to report on the level of engagement of their research prior to CERB review, as well as after. [End Page e5] • Engagement with the CERB increased markedly after review sessions were accomplished. Notably, none of the researchers had no or one-way community involvement after CERB review. • The CERB did an excellent job achieving two of its primary goals: helping researchers align their research with community values and giving stakeholder feedback. They were seen as less effective in achieving goals that require time and resources outside of CERB review, such as helping researchers identify and establish relationships with community organizations and helping to recruit and retain participants. This indicates to us that in order to achieve these goals that are important to both the CERB and researchers, the CERB needs increased financial support to fulfill them. Flint Focus groups • We conducted focus groups with diverse Flint residents to ask them about their concerns and priorities for research in their community, as well as thoughts about how the CERB could best represent them. Below are two themes we found in the data and some quotes that indicate how the CERB, and other CABs, might expand their roles in the community as well as have closer connections and communications with community residents. Who Should Care the Most? • Those concerned with developing a CAB and wanting to mediate relationships between researchers and the community. Also, anyone concerned with evaluating and establishing the impact of an existing CAB. Recommendations for Action • The evaluations show that CERB is doing...