There is increasing recognition and acceptance that traditional research approaches have, for the most part, failed to solve rising health disparities. To address the complexity of factors contributing to health disparities, we must conduct research that better reflects the context of individuals’ experience and lives through meaningfully engagement of individuals and communities in the research process. Community engaged research (CER) requires that communities have the capacity to participate as full partners; communities are consulted for their research priorities; all stakeholders are respected, valued and rewarded for their time and expertise, effective implementation and dissemination strategies, and public support for research (NIH 2016; Ahmed & Palermo 2010; Michener 2012). A CER approach can enable researchers to conduct research and produce results which may be more directly translated to improve health and eliminate disparities thus positively impacting the health and well-being of communities. The body of science supporting CER is growing and there is a need at most institutions to build capacity for use of CER methods. The purpose of this paper is to describe institutional efforts to build capacity for CER among researchers, students and our local community through education and training, establishment of translational research communities for investigators, and the development of Community Research Advisory Councils (C-RACs) and report iterative evaluation data and implications for future capacity building efforts..
Methods:
We have applied a multi-prong strategy to build capacity for CER. Through the Johns Hopkins Institute for Clinical and Translational Research (ICTR), we have implemented the following strategies: 1) Offer expert consultations, trainings and resources to better equip faculty, staff and students to collaborate with community on research activities, and 2) Support activities that promote the meaningful involvement of patients and community members throughout the research process—from topic selection through design and conduct of research to dissemination of results. CER consultations provide researchers the opportunity to meet with a panel of community members to obtain feedback and guidance at any stage of the research process. The CER consultations are conducted by the C-RAC’s Research Review Committee, a panel of community member stakeholders - with key insights and knowledge of patient/community experience, interests and research design. The panel includes health professionals, community leaders, communication specialist, patient advocates, students, and local residents.
The two C-RACs are fully supported by the ICTR: Johns Hopkins East Baltimore and Johns Hopkins Bayview. In the past year, we have conducted the following three training workshops. 1) In the “Dissemination Workshop: How to Communicate and Share Research Findings with the Public”, we described the role of dissemination in the research process and effective dissemination plans. Attending were 80 participants representing 16 advisory boards and 12 community based organizations. 2) In the “Nuts & Bolts of Community and Patient-Engaged Research” training, we provided an introduction to community-based participatory research principles, patient engagement, role of community members in research, and strategies to improve dissemination. There were 150 attendees (53% JHU researchers/students, 47% members of the community). 3) In the “Community-Engaged Recruitment” workshop, we provided introduction to community-based participatory research principles, patient engagement, and role of community members in research, with specific guidance on effective approaches to enhance research participant recruitment and retention efforts. Attendees included 180 research staff and investigators engaged in research participant activities.
Results:
The two C-RACs were formed in 2009 and are fully supported by the ICTR: 1) Johns Hopkins East Baltimore (25 members) and Johns Hopkins Bayview (18 members). C-CRAC membership has evolved and we see a need enhance the diversity of membership in terms of ethnic and racial identity as well as representation of additional stakeholder groups. C-RAC members have identified the need for additional training in the community advisory board member role, with more intense training for those interested in serving as co-investigators (e.g., on PCORI projects) as well as the need for the ICTR to establish a directory of community research advisory councils at JHU to facilitate communication and coordination of CER activities. Investigators initiating CER consults reported that the service provided an efficient and effective approach to engaging communities in research. Several have sought ongoing feedback on their study design, implementation and evaluation through the consult service. We also identified the need to better prepare investigators to respectfully communicate with C-RAC members.
Participants in the various trainings stated that the description of CBPR principles, hearing the ‘how I did it’ part, learning about the social problems community partners face, and learning how to identify community assets through a case study example were the most useful approaches. In addition, respondents identified hearing from community members during panel discussions, breakout sessions through which they were given a chance to work on CBPR projects, and learning how research positively impacts the community as the features that they most valued. However, some noted researcher resistance to the suggestions offered by community participants during the breakout sessions. C-RAC members rated the topics discussed as very useful for their work (93%) with the most useful information identified to be the list of questions used to assess the risks and benefits of research. They reported an opportunity to apply what they learned to research projects (64%) and reported increased capacity to evaluate risks and benefits of health research (72%). Respondents recommended that future workshops describe the full continuum of research process from planning (development of a research question) to community dissemination of research results, protection of study participants as well as additional time to network.
Conclusions:
The C-RAC provides a valuable platform to support CER. However, both C-RAC members and researchers require training to maximize benefit. Practical training targeting audiences with didactic and hands-on activities can be a useful tool to enhance capacity of academic and community partners for CER. Furthermore, our evaluation suggests that the training contributed to an increase in capacity and confidence of CAB members. Evaluation of long-term impact of CER trainings that involve academic and community partners together—such as ours—on the development of sustainable community-based research efforts is warranted. Evaluating the longer term impact of educational workshops is needed to prioritize and provide rationale for continuing to offer trainings and guide the trainers in selection of topics and skill building exercises for future trainings.