Community Engagement Studio Research Articles

3511 Adapting Community Engagement Studios to Accommodate Participants from Diverse and Rural/Frontier Communities

OBJECTIVES/SPECIFIC AIMS: Our goals in developing adaptations to the Community Engagement Studio model have been to: (1) enable investigators to consult with as broad a range of community “experts” (stakeholders) as possible, (2) make Studio participation feasible for stakeholders from rural and frontier areas, (3) create a safe environment for stakeholders from communities facing health disparities, who have had low participation in research, and (4) enable stakeholders to speak in the language in which they are most comfortable. METHODS/STUDY POPULATION: We have used several strategies to enable investigators to gain input from stakeholders in rural and frontier areas. If the research focuses on rural populations, we hold the Studio at a central location, usually at a restaurant in a private room, if this is available. If the investigator wants to hear from both rural and urban residents, we use videoconferencing via Skype or FaceTime when individuals have enough bandwidth to support it and/or feel comfortable using this technology. For those who have dial-up or no internet access, we provide a conference call line Trusting relationships are essential to creating a safe space in which stakeholders from communities facing health disparities can provide consultations to researchers. When an investigator wishes to consult with stakeholders from one racial/ethnic community, we contract with a leader or trusted member of that community to recruit appropriate stakeholders. The Studio is co-facilitated by a CCET staff member and a community leader in the community’s preferred language, with the leader translating for the CCET staff member. For Studios that involve stakeholders from multiple communities and that are conducted in English, we provide translators, if appropriate. Stakeholders using translation may be present in the room with other Studio participants or may be on the phone. RESULTS/ANTICIPATED RESULTS: Of the 35 Studios we have held, five have been held in rural locations and another five have included one or more rural/frontier stakeholders participating via phone or videoconferencing. Six Studios have been co-facilitated with community leaders and four others have included translators. Almost all Studios we have held in English have included individuals representing diverse communities. Anonymous surveys completed at the end of Studios show that participants report the following on 5-point Likert scales:. The facilitator managed the allotted time so that my voice was heard (67% strongly agree; 33% agree). The relevant experts were present at the Studio (78% strongly agree; 22% agree). I was satisfied with the Studio session (78% strongly agree; 22% agree). The Studio process was worth my time (89% strongly agree; 11% agree). The feedback provided by the community experts will improve the research project (68% strongly agree; 44% agree). Participants were also asked what they felt was their contribution to the research project. Among the most common themes were: increased researcher’s understanding of the community, increased researcher’s sensitivity to the community, provided feedback on the feasibility of the project, provided ideas on recruiting research participants, provided ideas for how to use the project results to benefit the community, and provided ideas on how to inform the community about the project. All participants said that they would participate in a Studio again. DISCUSSION/SIGNIFICANCE OF IMPACT: Studies at all stages in the research life cycle can be strengthened through consultations with community experts. These stakeholders can inform needs assessments, provide input on study design, supply critical information on supports and barriers to research participation, review study instruments for readability and cultural appropriateness, provide feedback on recruitment and educational materials, and inform dissemination of research results, among others. These consultations provide the most benefit to researchers when they include the voices of as broad a range of stakeholders as possible. We have shown that it is feasible to include stakeholders who live in rural and frontier areas in Studio consultations. We also have developed successful methods for holding Studio consultations with stakeholders who are members of communities facing health disparities and who speak multiple languages. This expanded representation in Community Engagement Studios strengthens research studies.

A Multilevel Approach to Stakeholder Engagement in the Formulation of a Clinical Data Research Network.

Objectives:To ensure meaningful engagement of stakeholders (patients, clinicians, and communities) in developing the Mid-South Clinical Data Research Network (MS-CDRN), we implemented a comprehensive, multilevel approach: (1) identify barriers to involving stakeholders in governance, network design, and implementation; (2) engage stakeholders in priority setting and research topic generation; (3) develop strategies to fully integrate stakeholders in CDRN governance and oversight; and (4) solicit guidance on patient-centered tools and strategies for recruiting research participants.Methods:We engaged stakeholders: (1) as integral research team members; (2) on oversight and advisory committees; (3) as consultants (using Community Engagement Studios); and (4) through interviews and surveys. We recruited stakeholders from community health centers, churches, barbershops, health fairs, a volunteer registry, and a patient portal. We prioritized recruitment from populations often underrepresented in research.Results:During the first 18 months, we engaged 5670 stakeholders in developing the MS-CDRN. These were research team members and on governance committees (N=10), consultants (N=58), survey respondents (N=5543), and interviewees (N=59). Stakeholders identified important barriers and facilitators to engagement, developed stakeholder-informed policies, provided feedback on priority topics and research questions, and developed an intake process for data requests and interventional studies that included reviewing for appropriate patient-centeredness, patient engagement, and dissemination.Discussion:Multilevel stakeholder engagement is a novel systematic approach to developing a meaningful patient-centered and patient-engaged research program. This approach allows ongoing input from highly engaged stakeholders while leveraging focused input from larger, more diverse groups to enhance the patient-centeredness of research and increase relevance to broader audiences.

Enhancing translational researchers' ability to collaborate with community stakeholders: Lessons from the Community Engagement Studio.

Community engagement is considered essential to effectively translate research into practice and is increasingly recognized as a key to successful clinical trial recruitment. Challenges to engaging community stakeholders in research persist and new methods are needed to facilitate meaningful stakeholder involvement. The Community Engagement Studio (CE Studio), a consultative model, has been used at every stage of the research process. Best practices drawn from the model could inform other methods of engagement. Using a mixed-methods approach that included evaluation surveys, impact surveys and interviews, we assessed the CE Studio program. We analyzed data from 75 CE Studios; 65 researchers and 591 community members completed surveys and 10 researchers completed interviews. Surveys indicate that 100% of researchers would request a CE Studio in the future, and 99.3% of community members would participate in a CE Studio again. We identified 6 practices to enhance community engagement in clinical and translational research: early input, researcher coaching, researcher humility, balancing power, neutral facilitator, and preparation of community stakeholders. These best practices may enhance the quality of existing community engagement approaches and improve the effectiveness of translational researchers' efforts to engage community stakeholders in their work.

2215 The value of storytelling in community stakeholder feedback for clinical and translational research

OBJECTIVES/SPECIFIC AIMS: Community stakeholder engagement along the translational spectrum of biomedical research has been identified as a potentially crucial factor for encouraging participation among underrepresented groups, improving research relevance, and adoption of evidence into practice. Although we have developed various methods to improve communication between researchers and community stakeholders, we have not focused much attention on the manner by which community stakeholders choose to communicate with researchers in scientific feedback settings. In our PCORI funded study using Community Engagement Studios to elicit feedback on research from community stakeholders, we found that feedback from participants was frequently provided in the form of stories. This presentation aims to describe these narratives, examine their function in the feedback process and consider how a focus on these narratives enhances our understanding of community engagement for clinical and translational research. METHODS/STUDY POPULATION: The present study comes from a larger randomized, controlled methodological study. We randomized 20 investigators seeking input on their research to either a Community Engagement Studio (a panel of community members or patients) or a Translational Studio (a panel of researchers). Any faculty member or research trainee at Vanderbilt University or Meharry Medical College was eligible to participate. Each Studio panel was convened to provide project-specific input. The 153 stakeholders who participated in CE Studios were patients, caregivers, or patient advocates identified by health status, health condition, or demographic variables based on the project-based needs of the 20 researchers randomized in this project. Stakeholders include individuals with diabetes, heart failure, Parkinson’s disease, sickle cell disease, and ICU survivors. All stakeholders had experience as a partner or consultant on a research project or through serving on a research advisory board or committee. All Studios were recorded and transcribed, and experienced qualitative researchers analyzed the data. For this paper, we focus on the narrative feedback in the form of stories elicited in the CE Studios. Using qualitative methods, we coded the transcripts from the 20 CE Studios to identify stories and their functions in the feedback. Stories were defined as narratives with (a) at least one actor (b) action that unfolds over time, and (c) a realization, destination, or conflict resolution (i.e., a point of the story). For example, “I refilled my mother’s pillbox on Sunday and on Friday I found the pillbox still completely full” would be a story, however, “my mother doesn’t take her meds correctly” would not. We coded the stories for how they facilitated communication in the Studio using an open-coding style, that is we did not apply a specific theoretical framework of interaction or communication. It was possible for any given story to have more than one code applied to it; that is they were not classified in a mutually exclusive way. RESULTS/ANTICIPATED RESULTS: We found 5 major functions of stories in the Studios. Basic sender-receiver functions were noted, including responding to queries and seeking mutual understanding. The other functions served to move or add to the conversation, including adding expansion and depth, characterizing abstract concepts, and providing context, with the latter being the most frequent function of stories. Speakers provided context in a wide variety of dimensions, ranging from the context of the body to spatial and institutional contexts. These stories served to help others understand the speakers’ lived experiences. DISCUSSION/SIGNIFICANCE OF IMPACT: We often engage community members in research for their expertise with regards to their lived experiences as patients or community members, and for their experiences of healthcare and social determinants of health in particular community contexts. Yet we may expect them to share their expertise in a manner that is consistent with a scientific, explanatory framing and language. However, we know there is a difference in the way that professional researchers discuss research Versus how community members discuss research. In our PCORI study, we found that our Community Studio participants relied on storytelling as an important means to communicate their lived experiences. Their stories were often key to communicating the complex contexts of their experiences. We focus on examining these narrative practices and their functions in how community members engaged with and provided advice to researchers. This understanding may help us in: (1) Characterizing the contexts, processes, and meanings associated with community stakeholder experiences that are otherwise difficult to access. (2) Identifying community priorities relevant to research that are embedded in community narratives to better align research priorities with community needs and to improve patient outcomes. (3) Collecting insights for improving the design of community engagement activities in research. (4) Harnessing more fully the potential of community engagement in research.

Comprehensive strategy for capturing and integrating community input into community research training curricula.

Community stakeholders often participate in community research training curricula development. There is limited information describing how their input informs curricula. This paper describes input solicitation methods, input received, and examples of its integration. From June 2014 to June 2016, community members (CMs) and community-based organizations (CBOs) guided curricula development tailored for CMs and CBOs, respectively. Engagement methods included a strategic planning retreat, surveys, a listening session, workgroup meetings, and community engagement studios. Descriptive statistics were used to summarize survey input. For other methods, input was extracted and compiled from facilitator notes. CMs (n = 37) and CBOs (n = 83) providing input included patients and caregivers and advocacy, community service, and faith-based organizations, respectively. The major feedback categories were training topic priorities, format (e.g., face-to-face vs. online), logistics (e.g., training frequency), and compensation (e.g., appro-priateness). Input directly guided design of CBO and CM curricula (e.g., additional time devoted to specific topics based on feedback) or helped to finalize logistics. Multiple quantitative and qualitative methods can be used to elicit input from community stakeholders to inform the development of community research training curricula. This input is essential for the development of training curricula that are culturally relevant and acceptable.

Community Engagement Studios: A Structured Approach to Obtaining Meaningful Input From Stakeholders to Inform Research.

ProblemEngaging communities in research increases its relevance and may speed the translation of discoveries into improved health outcomes. Many researchers lack training to effectively engage stakeholders, whereas academic institutions lack infrastructure to support community engagement.ApproachIn 2009, the Meharry-Vanderbilt Community-Engaged Research Core began testing new approaches for community engagement, which led to the development of the Community Engagement Studio (CE Studio). This structured program facilitates project-specific input from community and patient stakeholders to enhance research design, implementation, and dissemination. Developers used a team approach to recruit and train stakeholders, prepare researchers to engage with stakeholders, and facilitate an in-person meeting with both.OutcomesThe research core has implemented 28 CE Studios that engaged 152 community stakeholders. Participating researchers, representing a broad range of faculty ranks and disciplines, reported that input from stakeholders was valuable and that the CE Studio helped determine project feasibility and enhanced research design and implementation. Stakeholders found the CE Studio to be an acceptable method of engagement and reported a better understanding of research in general. A tool kit was developed to replicate this model and to disseminate this approach.Next StepsThe research core will collect data to better understand the impact of CE Studios on research proposal submissions, funding, research outcomes, patient and stakeholder engagement in projects, and dissemination of results. They will also collect data to determine whether CE Studios increase patient-centered approaches in research and whether stakeholders who participate have more trust and willingness to participate in research.

Case Study: Community Engagement and Clinical Trial Success: Outreach to African American Women.

This brief report examines how the use of community engagement principles and approaches enhanced clinical trial recruitment and retention. The Community-Engaged Research Core (CERC), a CTSA-supported resource designed to facilitate community involvement in clinical and translational research, was consulted to provide assistance with the implementation of the clinical trial, and specifically to enhance participation of the target population-African American women. CERC's key recommendations included: (1) convene a Community Engagement Studio, (2) redesign the recruitment advertisement, (3) simplify the language used to explain the scope of the study, and (4) provide transportation for participants. As a result of these interventions, a comprehensive strategy to recruit, enroll, and retain participants was formulated. After implementation of the plan by the study team, enrollment increased 78% and recruitment goals were met 16 months ahead of schedule. Participant retention and study drug adherence was 100%. We conclude that community engagement is essential to the development of an effective multifaceted plan to improve recruitment of underrepresented groups in clinical trials.