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283 Progress in Community Health Partnerships Writing, Dissemination and Reviewer Learning Community for Community-Patient Authors and Reviewers (henceforth, PCHP LC)
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- Karen Calhoun, Tabia Akintobi, Al Richmond, N Glassman, Rosanna Barrett, Hal Strelnick
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- Journal:
- Journal of Clinical and Translational Science / Volume 8 / Issue s1 / April 2024
- Published online by Cambridge University Press:
- 03 April 2024, pp. 86-87
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OBJECTIVES/GOALS: The peer-reviewed journal Progress in Community Health Partnerships (PCHP) promotes health research partnerships to improve community health. PCHP’s Writing, Dissemination and Reviewer Learning Community Pilot aims to increase stakeholders writing and reviewing for greater relevance and diversity. METHODS/STUDY POPULATION: Led by PCHP’s Editorial Team, Morehouse SOM, Community-Campus Partnerships for Health (CCPH) and a community-academic Workgroup, the LC will guide stakeholders on scholarly writing and publish collaborative research. It builds on the 2017 Writing/Dissemination Learning Institute held by Morehouse, CCPH, and Community Based Organization Partners with the APHA Public Health Caucus. The LC begins with a Workshop [https://sites.google.com/view/pchp2023/pchpcommunity2023] alongside the 2023 APHA Annual Meeting. Wrap arounds include a PCHP Special Issue (participants work), Webinars, PCHP Reflections/Community Perspectives Article Guidelines [https://www.press.jhu.edu/journals/progress-community-health-partnerships-research-education-and-action], “Beyond the Manuscript [https://open.spotify.com/show/2LiBanXAyHyOqNSeGnBPHs]” Podcast, Toolkit/Resources; and coaching. The evaluation will inform PCHP practices. RESULTS/ANTICIPATED RESULTS: Key outcomes include successful implementation of all LI activities. The cohort (approximately 40 stakeholders representing partnerships) will increase exposure to scholarly writing and peer review, ideally publish 12+ manuscripts (e.g., PCHP special issue), increase diversity in scholarly writing, and strengthen recognition/significance of stakeholder authorship in the research community. The year 1 pilot evaluation (e.g., tracking participant authorship, documenting outcomes/lessons learned) will provide evidence to encourage sustainability, model responsiveness among other peer reviewed journals, inform PCHP, and increase diversity in scholarly writing on health disparities research. DISCUSSION/SIGNIFICANCE: The pilot will build a sustainable model and how PCHPaddresses health disparities to increase diversity, equity, and inclusion. The LC aims to diversify framing community health research, supporting/publishing stakeholders work, and increasing diversity among reviewers, all impacting the field.
Development of a multi-component intervention to promote participation of Black and Latinx individuals in biomedical research
- Maria I. Danila, Jeroan J. Allison, Karin Valentine Goins, Germán Chiriboga, Melissa Fischer, Melissa Puliafico, Amy S. Mudano, Elizabeth J. Rahn, Jeanne Merchant, Colleen E. Lawrence, Leah Dunkel, Tiffany Israel, Bruce Barton, Fred Jenoure, Tiffany Alexander, Danny Cruz, Marva Douglas, Jacqueline Sims, Al Richmond, Erik D. Roberson, Carol Chambless, Paul A. Harris, Kenneth G. Saag, Stephenie C. Lemon
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- Journal:
- Journal of Clinical and Translational Science / Volume 5 / Issue 1 / 2021
- Published online by Cambridge University Press:
- 14 June 2021, e134
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Introduction:
Barriers to research participation by racial and ethnic minority group members are multi-factorial, stem from historical social injustices and occur at participant, research team, and research process levels. The informed consent procedure is a key component of the research process and represents an opportunity to address these barriers. This manuscript describes the development of the Strengthening Translational Research in Diverse Enrollment (STRIDE) intervention, which aims to improve research participation by individuals from underrepresented groups.
Methods:We used a community-engaged approach to develop an integrated, culturally, and literacy-sensitive, multi-component intervention that addresses barriers to research participation during the informed consent process. This approach involved having Community Investigators participate in intervention development activities and using community engagement studios and other methods to get feedback from community members on intervention components.
Results:The STRIDE intervention has three components: a simulation-based training program directed toward clinical study research assistants that emphasizes cultural competency and communication skills for assisting in the informed consent process, an electronic consent (eConsent) framework designed to improve health-related research material comprehension and relevance, and a “storytelling” intervention in which prior research participants from diverse backgrounds share their experiences delivered via video vignettes during the consent process.
Conclusions:The community engaged development approach resulted in a multi-component intervention that addresses known barriers to research participation and can be integrated into the consent process of research studies. Results of an ongoing study will determine its effectiveness at increasing diversity among research participants.
2215 The value of storytelling in community stakeholder feedback for clinical and translational research
- Laurie L. Novak, Sheba George, Kenneth Wallston, Yolanda Vaughn, Tiffany Israel, Yvonne Joosten, Neely Williams, Consuelo Wilkins, Al Richmond
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- Journal:
- Journal of Clinical and Translational Science / Volume 2 / Issue S1 / June 2018
- Published online by Cambridge University Press:
- 21 November 2018, p. 75
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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.