Beyond the Manuscript: Challenges and Lessons Learned from a Community-Engaged Evaluation of a Community Advisory Board

Beyond the Manuscript: Challenges and Lessons Learned from a Community-Engaged Evaluation of a Community Advisory Board Emma Tumilty, Stephanie Cargill, and Bryan Spencer Welcome to Progress in Community Health Partnerships' latest episode of our Beyond the Manuscript podcast. In each volume of the Journal, the editors select one article for our Beyond the Manuscript post-study interview with the authors. Beyond the Manuscript provides the authors the opportunity to tell listeners what they would want to know about the project beyond what went into the final manuscript. In this episode of Beyond the Manuscript, Associate Editor, Emma Tumilty, interviews Stephanie Cargill and Bryan Spencer, two of the authors of two articles in this issue, "Evaluating the Process and Impact of Flint's Community Ethics Review Board: A Pilot Study" and "Challenges and Lessons Learned from Community-Engaged Evaluation of a Community Advisory Board." Your browser does not support the audio tag. Beyond the Manuscript. Click to hear audio Emma Tumilty: Hi, I'm Emma Tumilty, an Associate Editor with the journal. I have the great pleasure today to talk to Stephanie Cargill and Bryan Spencer, who have a couple articles in the issue that this podcast pertains to. One is an evaluation of a community review board named "Evaluating the Impact and Effectiveness of Flint's Community Ethics Review Board: A Pilot Study." And then, the article that we're going to be talking about today is "Challenges and Lessons Learned from a Community-Engaged Evaluation of a Community Advisory Board." I'm going to let the authors introduce themselves. So, Stephanie, if you could go first? Stephanie Cargill: Sure. Hi, I'm Stephanie Solomon Cargill. I am an Associate Professor at St. Louis University in their Health Care Ethics Department. I'm also in the Public Health Department there. I'm also the chair of an IRB called Castle IRB. And my work is primarily with the interactions between community-engaged research and IRBs as well as other more broad research ethics issues. Emma Tumilty: Fantastic. Thank you. And Bryan, if I can throw it to you? Bryan Spencer: Okay. My name is Bryan Spencer and first of all, I'm a student. I went back to school for developmental psychology. But I also have a background in health administration. I've worked in the community—born in Flint and I've worked in the community for many years. For this project my connection to the community was a benefit that I was bringing, in belonging to many boards over the years and just community projects, health-related projects, education-related projects, and maintaining a connection to the community. And that's what I bring to the project. And I guess that's a little bit of me. Emma Tumilty: Thanks. Stephanie Cargill: And you were on the CBOP-CERB, which we will talk about. Bryan Spencer: I was, yeah. Stephanie Cargill: Okay. [End Page 37] Bryan Spencer: I was. Emma Tumilty: And maybe that's where we'll start. So, CBOP-CERB, which is the Community-Based Organization Partner Community Ethics Research Board, is what all of the articles in this issue from Stephanie and Bryan relate to. And I'm going to ask Bryan if he can tell us a little bit about CERB to get started. Bryan Spencer: Okay. CERB started in 2009 and was put together by Kent Key, Dr. Kent Key, with the aim of protecting the community. There's long been a history of people feeling that research has not really been for them, taking advantage of them, and so he started that with the idea of a community kind of IRB. And these are residents from the community who have long been involved in research, so they understand how research works, and to protect the community, promoting benefits, and staying away from harms that any research could bring to the community. About 2014 the water situation in Flint really brought a lot of research here, and so CERB really kind of ramped up, and there were a lot...