Background: In order for precision health to address health disparities, engagement of diverse racial/ethnic minority communi­ties and the physicians that serve them is critical.Methods: A community-based participatory research approach with mixed methods was employed to gain a deeper understanding of precision health research and practice among American Indian, African American, Latino, Chinese, and Vietnamese groups and physicians that serve these communi­ties. A survey assessed demographics and opinions of precision health, genetic testing, and precision health research. Focus groups (n=12) with each racial/ethnic minority group and physicians further explored at­titudes about these topics.Results: One hundred community mem­bers (American Indian [n=17], African American [n=13], Chinese [n=17], Latino [n=27], and Vietnamese [n=26]) and 14 physicians completed the survey and participated in the focus groups. Familiarity with precision health was low among com­munity members and high among physi­cians. Most groups were enthusiastic about the approach, especially if it considered influences on health in addition to genes (eg, environmental, behavioral, social fac­tors). Significant concerns were expressed by African American and American Indian participants about precision health practice and research based on past abuses in bio­medical research. In addition, physician and community members shared concerns such as security and confidentiality of genetic information, cost and affordability of genetic tests and precision medicine, discrimina­tion and disparities, distrust of medical and research and pharmaceutical institutions, language barriers, and physician’s specialty.Conclusions: Engagement of racial/ethnic minority communities and the providers who serve them is important for advancing a precision health approach to addressing health disparities.Ethn Dis. 2020;30(Suppl 1):137-148; doi:10.18865/ed.30.S1.137

Background New patient-centric integrated care models are enabled by the capability to exchange the patient’s data amongst stakeholders, who each specialise in different aspects of the patient’s care. This requires a robust, trusted and flexible mechanism for patients to offer consent to share their data. Furthermore, new IT technologies make it easier to give patients more control over their data, including the right to revoke consent. These characteristics challenge the traditional paper-based, single-organisation-led consent process. The Dovetail digital consent application uses a mobile application and blockchain based infrastructure to offer this capability, as part of a pilot allowing patients to have their data shared amongst digital tools, empowering patients to manage their condition within an integrated care setting. Objective To evaluate patient perceptions towards existing consent processes, and the Dovetail blockchain based digital consent application as a means to manage data sharing in the context of diabetes care. Method Patients with diabetes at a General Practitioner practice were recruited. Data were collected using focus groups and questionnaires. Thematic analysis of the focus group transcripts and descriptive statistics of the questionnaires was performed. Results There was a lack of understanding of existing consent processes in place, and many patients did not have any recollection of having previously given consent. The digital consent application received favourable feedback, with patients recognising the value of the capability offered by the application. Patients overwhelmingly favoured the digital consent application over existing practice. Conclusions Digital consent was received favourably, with patients recognising that it addresses the main limitations of the current process. Feedback on potential improvements was received. Future work includes confirmation of results in a broader demographic sample and across multiple conditions.

Collaboration between academic researchers and community members, clinicians, and organizations is valued at all levels of the program development process in community-engaged health research (CEnR). This descriptive study examined a convenience sample of 30 projects addressing training in CEnR methods and strategies within the Clinical and Translational Science Awards (CTSA) consortium. Projects were selected from among posters presented at an annual community engagement conference over a 3-year period. Study goals were to learn more about how community participation in the design process affected selection of training topics, how distinct community settings influenced the selection of training formats, and the role of evaluation in preparing training participants to pursue future health research programming. Results indicated (1) a modest increase in training topics that reflected community health priorities as a result of community (as well as academic) participation at the program design stage, (2) a wide range of community-based settings for CEnR training programs, and (3) the majority of respondents conducted evaluations, which led in turn to revisions in the curricula for future training sessions. Practice and research implications are that the collaboration displayed by academic community teams around CEnR training should be traced to see if this participatory practice transfers to the design of health promotion programs. Second, collaborative training design tenets, community formats and settings, and evaluation strategies should be disseminated throughout the CTSA network and beyond. Third, common evaluative metrics and indicators of success for CEnR training programs should be identified across CTSA institutions.

BackgroundThe Clinical and Translational Science Award (CTSA) institutions are increasing development of training programs in community-engaged research (CEnR) to support translational science.MethodsThis study sampled posters at CTSA national meetings to identify CEnR training approaches, topics, and outcomes.ResultsQualitative analysis of 30 posters revealed training topics and outcomes focused primarily on CEnR capacity building, overcoming barriers, systems change, and sustainability.ConclusionFurther research should focus on development and results of CTSA CEnR training program metrics.

The rapid increase of community-based participatory research (CBPR) as an approach to research underscores the importance of expanding access to training in CBPR principles and strategies. CBPR is increasingly recognized as a collaborative approach that can reduce health disparities through building on the strengths of each partner and using scientific knowledge for health action. However, there is a need to increase access to CBPR training for academics, public health professionals, and especially underserved communities that may benefit significantly from new collaborative research projects. This article reports on the efforts of a regional CBPR training consortium in the United States to develop, implement, and evaluate a 5-day CBPR training curriculum tailored to a diverse audience of public health practitioners, academics, students, and community members. The conference goals were to create partnerships and networks for designing, implementing, and evaluating CBPR projects and to identify ways to integrate knowledge from academic, agency, and community partners. The curriculum addressed the following core daily themes: Creating, Building, and Maintaining Partnerships; Collaborative Study and Intervention Design; Collaborative Data Collection, Analysis, and Dissemination; The Intersection of CBPR, Policy, and Social Change; and Fundraising and Sustainability for CBPR. The CBPR curriculum achieved its goal of expanding access to CBPR training for diverse stakeholders in the area, including those from underserved communities and developing a training curriculum with the potential for replication in other locations nationally and internationally. Lessons learned from the implementation and evaluation of the training are shared.Keywords curriculum and course design, face-to-face instruction at DREXEL UNIV LIBRARIES on June 4, 2016 php.sagepub.com Downloaded from