Improving Community Advisory Board Engagement In Precision Medicine Research To Reduce Health Disparities

80 Improving Community Advisory Board Engagement in Precision Medicine Research to Reduce Health Disparities Conners, et al. Journal of Health Disparities Research and Practice Volume 12, Issue 6, Winter 2019, pp. 80-94 © 2011 Center for Health Disparities Research School of Community Health Sciences University of Nevada, Las Vegas Improving Community Advisory Board Engagement in Precision Medicine Research to Reduce Health Disparities Erin Connors, Tennessee State University Rebecca Selove, Tennessee State University Juan Canedo, Meharry Medical College Maureen Sanderson, Meharry Medical College Pamela Hull, Vanderbilt University Marilyn Adams, Meharry-Vanderbilt-TSU Cancer Partnership (MVTCP) Community Advisory Board Ila McDermott, MVTCP Community Advisory Board Calvin Barlow, MVTCP Community Advisory Board Denice Johns-Porter, MVTCP Community Advisory Board Caree McAfee, Vanderbilt University Karen Gilliam, Vanderbilt University Oscar Miller, Tennessee State University Nora Cox, Tennessee State University Mary Kay Fadden, Meharry Medical College Stephen King, Vanderbilt University Hilary Tindle, Vanderbilt University Medical Center Corresponding Authors: Erin Connors, ABSTRACT Community Advisory Boards (CABs) are used in efforts to reduce health disparities; however, there is little documentation in the literature regarding their use in precision medicine research. In this case study, an academic-CAB partnership developed a questionnaire and patient educational materials for two precision smoking cessation interventions that involved use of genetic or genetically-informed information. The community-engaged research (CEnR) literature provided a framework for enhancing benefits to CAB members involved in developing research documents for use with a low-income, ethnically diverse population of smokers. The academic partners integrated three CEnR strategies: 1) in-meeting statements acknowledging their desire to learn from community partners, 2) in-meeting written feedback to and from community partners, and 3) a survey to obtain CAB member feedback post-meetings. Strategies 1 and 2 yielded Journal of Health Disparities Research and Practice Volume 12, Issue 6, Winter 2019 http://digitalscholarship.unlv.edu/jhdrp/ Follow on Facebook: Health.Disparities.Journal Follow on Twitter: @jhdrp 81 Improving Community Advisory Board Engagement in Precision Medicine Research to Reduce Health Disparities Conners, et al. modifications to pertinent study materials, as well as suggestions for improving meeting operations that were then adopted, as appropriate, by the academic partners. The survey indicated that CAB members valued the meeting procedure changes which appeared to have contributed to improvements in attendance and satisfaction with the meetings. Further operationalization of relevant partnership constructs and development of tools for measuring these aspects of community-academic partnerships is warranted to support community engagement in precision medicine research studies. Keywords: community-engaged research, community advisory board, health disparities, precision medicine INTRODUCTION Advantages of citizen participation in health disparities-related research have been described as early as the 1970s (Ahmed, Neu Young, DeFino, Franco, & Nelson, 2017; Lawrence & Stewart, 2016; Buchanon, Reddy, Sifunda, James, & Naidoo, 2010). These include community members having access to research tools and results that empower them to address concerns about their community’s health, build their capacity to deliver important services in their community, and develop research questions of importance to them (Cheney et al., 2016; Coffey et al., 2017; Halbert et al., 2016; Cunningham et al., 2015; Simonds, Wallerstein, Duran, & Villegas, 2013). Researchers learn from community members who share about their culture and social networks, and in turn, gain valuable insight in identifying research topics and methods that are salient to and informed by members of marginalized communities. Furthermore, they obtain involvement and support from more diverse research participants, richer interpretation of results, and improved implementation of research-based interventions (Cargo & Mercer, 2008; Bowers, Jacobson, & Krupp, 2017; Kaiser, Thomas, & Bowers, 2017; Rhodes et al., 2018; Simonds et al., 2013). The importance of community-engaged research (CEnR) for academic investigators in the expanding fields of genomics (Ginsburg & Willard, 2009) and, more broadly, precision medicine (Schleidgen, Klingler, Bertram, Rogowski, & Marckmann, 2013; de Grandis & Halgunset, 2016) has been emphasized as a means of accruing these benefits in these new areas of health services. Successful partnerships between university-based researchers and community advisory boards (CABs) offer the potential to accelerate the application of precision medicine to minority communities, and reduce the risk of widening disparities in access to quality care (Graves & Tercyak, 2015; Halbert, McDonald, Vadaparampil, Rice, & Jefferson, 2016; Halbert et al., 2016; Kaphingst et al., 2015; Kaplan et al., 2017; Kimball, Nowakowski, Maschke, & McCormick, 2014; Korngiebel, Thummel, & Burke, 2017; Ma, Rosas, & Lv, 2016). The appropriate implementation and use of genomic tests is influenced by several system and patient variables, such as use of cultural diversity of research participants, level of patient health literacy, and the context in which patients are provided with information about reasons for testing and the implications of test results (Korngiebel et al., 2017). Potential barriers to addressing disparities in development and application of precision medicine tools can be addressed by including more minority participants in precision medicine research. In addition, engaged community partners can assist researchers by addressing health Journal of Health Disparities Research and Practice Volume 12, Issue 6, Winter 2019 http://digitalscholarship.unlv.edu/jhdrp/ Follow on Facebook: Health.Disparities.Journal Follow on Twitter: @jhdrp 82 Improving Community Advisory Board Engagement in Precision Medicine Research to Reduce Health Disparities Conners, et al. literacy related to genomic and precision medicine, and considering the context in which research participants will be asked for, and informed about, use of their biological samples for genetic testing. Communicating the benefits of precision medicine to minority patients poses a challenge that requires additional investigation (National Academies of Sciences, Engineering, and Medicine, 2016a). Williams et al. (2018) and others (National Academies of Sciences, Engineering, and Medicine, 2016b) noted that advisors from minority and underserved communities can provide critical advice to academic researchers that is useful for translating precision medicine concepts for audiences that may be unfamiliar with terms associated with genomic technologies used in intervention researc (...truncated)