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

2018 ◽  
Vol 2 (S1) ◽  
pp. 75-75 ◽  
Author(s):  
Laurie L. Novak ◽  
Sheba George ◽  
Kenneth Wallston ◽  
Yolanda Vaughn ◽  
Tiffany Israel ◽  
...  
Keyword(s):  
Community Engagement ◽  
Translational Research ◽  
Lived Experiences ◽  
Research Priorities ◽  
Receiver Functions ◽  
The Body ◽  
Community Members ◽  
Community Stakeholder ◽  
Community Stakeholders ◽  
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.

scholarly journals Enhancing translational researchers’ ability to collaborate with community stakeholders: Lessons from the Community Engagement Studio

2018 ◽  
Vol 2 (4) ◽  
pp. 201-207 ◽  
Author(s):  
Yvonne A. Joosten ◽  
Tiffany L. Israel ◽  
Amy Head ◽  
Yolanda Vaughn ◽  
Victoria Villalta Gil ◽  
...  
Keyword(s):  
Best Practices ◽  
Community Engagement ◽  
Stakeholder Involvement ◽  
Research Process ◽  
Community Members ◽  
New Methods ◽  
Community Stakeholders ◽  
Recruitment Challenges ◽  
Clinical And Translational Research

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.

scholarly journals Clinical and Translational Research and Community Engagement: Implications for Researcher Capacity Building

2012 ◽  
Vol 5 (4) ◽  
pp. 329-332 ◽  
Author(s):  
Linda Sprague Martinez ◽  
Beverley Russell ◽  
Carolyn Leung Rubin ◽  
Laurel K. Leslie ◽  
Doug Brugge
Keyword(s):  
Community Engagement ◽  
Translational Research ◽  
Capacity Building ◽  
Clinical And Translational Research

scholarly journals A taxonomy of impacts on clinical and translational research from community stakeholder engagement

2019 ◽  
Vol 22 (4) ◽  
pp. 731-742 ◽  
Author(s):  
Sarah C. Stallings ◽  
Alaina P. Boyer ◽  
Yvonne A. Joosten ◽  
Laurie L. Novak ◽  
Al Richmond ◽  
...  
Keyword(s):  
Translational Research ◽  
Stakeholder Engagement ◽  
Community Stakeholder ◽  
Clinical And Translational Research

scholarly journals 3406 Understanding the Barriers, Challenges, and Facilitators to Community-Engaged Research: A Review of a CTSA Community Engagement Pilot Program

2019 ◽  
Vol 3 (s1) ◽  
pp. 99-100
Author(s):  
Ashley Dunn ◽  
Kendra L. Smith ◽  
Rhonda McClinton-Brown ◽  
Jill W. Evans ◽  
Lisa Goldman-Rosas ◽  
...  
Keyword(s):  
Health Disparities ◽  
Focus Group ◽  
Community Engagement ◽  
Translational Research ◽  
Pilot Project ◽  
Pilot Program ◽  
Stanford University ◽  
Community Engaged Research ◽  
Academic Partnerships ◽  
Clinical And Translational Research

OBJECTIVES/SPECIFIC AIMS: Engaging patients and consumers in research is a complex process where innovative strategies are needed to effectively translate scientific discoveries into improvements in the public’s health (Wilkins et. al., 2013; Terry et. al., 2013). The Clinical Translational Science Awards (CTSA)—supported by the National Institute of Health (NIH) under the auspices of the National Center for Advancing Translational Sciences (NCATS)—aim to provide resources and support needed to strengthen our nation’s clinical and translational research (CTR) enterprise. In 2008, Stanford University was awarded a CTSA from the NIH, establishing Spectrum (Stanford Center for Clinical and Translational Research and Education) and its Community Engagement (CE) Program aimed at building long-standing community-academic research partnerships for translational research in the local area surrounding Stanford University. To date, the CE Pilot Program has funded 38 pilot projects from the 2009-2017 calendar year. The purpose of this study was to understand, through a unique pilot program, the barriers, challenges, and facilitators to community-engaged research targeting health disparities as well as community-academic partnerships. METHODS/STUDY POPULATION: Investigators conducted a qualitative study of the community engagement pilot program. Previous pilot awardees were recruited via email and phone to participate in a one-hour focus group to discuss their pilot project experience—describing any barriers, challenges, and facilitators to implementing their pilot project. RESULTS/ANTICIPATED RESULTS: The focus group revealed that community engage research through the pilot program was not only appreciated by faculty, but projects were successful, and partnerships developed were sustained after funding. Specifically, the pilot program has seen success in both traditional and capacity building metrics: the initial investment of $652,250.00 to fund 38 projects has led to over $11 million dollars in additional grant funding. In addition, pilot funding has led to peer-reviewed publications, data resources for theses and dissertations, local and national presentations/news articles, programmatic innovation, and community-level impact. Challenges and barriers were mainly related to timing, grant constraints, and university administrative processes. DISCUSSION/SIGNIFICANCE OF IMPACT: The Community Engagement Pilot Program demonstrates an innovative collaborative approach to support community-academic partnerships. This assessment highlights the value and importance of pilot program to increase community engaged research targeting health disparities. Challenges are mainly administrative in nature: pilot awardees mentioned difficulties working on university quarterly timelines, challenges of subcontracting or sharing money with community partners, onerous NIH prior approval process, and limitations to carryover funding. However, pilot grants administered through the program strengthen the capacity to develop larger scale community-based research initiatives.

scholarly journals 2332

2017 ◽  
Vol 1 (S1) ◽  
pp. 74-74 ◽  
Author(s):  
Dennis P. Scanlon ◽  
Laura J. Wolf ◽  
Cynthia Chuang ◽  
Jen Kraschnewski ◽  
Eugene Lengerich ◽  
...  
Keyword(s):  
Conceptual Framework ◽  
Community Engagement ◽  
Translational Research ◽  
Research Committee ◽  
Literature Synthesis ◽  
Individual Project ◽  
Study Population ◽  
Effective Community ◽  
Major Factors ◽  
Clinical And Translational Research

OBJECTIVES/SPECIFIC AIMS: Community engagement is a commonly used term, but is complex in both meaning and application. In order to help academic institutions and administrators develop infrastructure to promote and support community engagement and to help investigators work productively with communities, this analysis discusses the major components of community engagement in research on both the institutional and individual project levels as well as the interplay between them. METHODS/STUDY POPULATION: A literature synthesis conducted by a community engagement in research committee at 1 CTSA institution that examined the myriad factors related to effective community engagement in research identified across multiple disciplines was used to distill the major factors identified, assesses the interplay of the identified factors, and produce a conceptual model to help administrators and investigators apply best practices in engaging communities in clinical and translational research. RESULTS/ANTICIPATED RESULTS: This work takes a concept—community engagement in research—that is often stated and discussed, but is highly complex and challenging to implement—and identifies and discusses the multiple, interrelated factors germane to it. The model illustrates that while community engagement in research is implemented in the context of individual projects, a deep and continual interplay between individual projects and the goals, capacity, and policies of research institutions is needed for rigorous, ethical, and effective community engagement. DISCUSSION/SIGNIFICANCE OF IMPACT: Results are presented through a conceptual framework which displays the major components needed for rigorous, ethical, and effective community engagement in clinical and translational research. In addition, the conceptual framework presented will provide assistance to those developing approaches to measure and evaluate institutional readiness for community engagement in research as well as the effectiveness of individual community engagement efforts.

scholarly journals Community-engaged research to develop a Chicago violence research agenda and recommendations to support future community engagement

2021 ◽  
Vol 8 (S1) ◽  
Author(s):  
Alexander Ellyin ◽  
Kelli Day ◽  
Jacqueline Samuel ◽  
Tami Bartell ◽  
Dion McGill ◽  
...  
Keyword(s):  
Violence Prevention ◽  
Community Engagement ◽  
Research Agenda ◽  
Academic Community ◽  
Future Research ◽  
Prevention Research ◽  
Community Members ◽  
Community Factors ◽  
Community Stakeholders

Abstract Background Chicago has a history of gun violence with some neighborhoods, particularly Black and Brown communities, being disproportionately affected and Black male youth experiencing an even more disparate impact. Too often, violence prevention research is developed and carried out with little or no input from the people living in the most affected communities. The objective of the Community-Academic Collaboration to Prevent Violence in Chicago (CACPVC) was to bring together individuals from impacted communities with academic researchers and other community stakeholders to discuss violence and co-create a research agenda that addresses topics of mutual concern, and recommendations for engaging stakeholders including community members and organizations and funders in violence and violence prevention research. Methods From 2014 to 2015, community members and organizations from seven defined regions across Chicago were recruited to participate. An organization network gathering was held in each region for researchers, funders, and community organization representatives to discuss violence prevention. Open community forums then took place in each community. Violence data by region was shared followed by facilitated group discussions that were recorded by youth scribes. Notes were thematically coded, grouped, and compiled after which a list of topics was refined by the CACPVC Work Group, allowing for investigator triangulation. A survey was disseminated to community stakeholders to prioritize the topics. Results Seven network gatherings (127 attendees) and community forums (133 attendees) were held. Topic areas identified during the gatherings and forums included root causes/cycle of violence, racism and bias/structural violence, trajectory of violence, protective factors and nonviolence, geographic pattern change, violence prevention strategies, youth, family factors, community factors, school, police, gangs/street organizations, and media and public perceptions. Recommendations to support community engagement were grouped as role of research in reducing violence, role of community in violence research, relationships and respect, academic-community communication, financial considerations, training, practical considerations, research design, sharing results, communication about and use of data, and recommendations for funders. Conclusions The violence research agenda will be used to inform community-engaged violence prevention research. The recommendations for community engagement provide a resource for researchers about topics to consider to meaningfully engage community members in future research.

scholarly journals 2438 Community-based research networks: Providing infrastructure for clinical and translational research in the State of Michigan

2018 ◽  
Vol 2 (S1) ◽  
pp. 65-66
Author(s):  
Meghan Spiroff ◽  
Patricia Piechowski ◽  
Karen D. Calhoun ◽  
Susan Goold ◽  
Ayse Buyuktur ◽  
...  
Keyword(s):  
Focus Groups ◽  
Community Health ◽  
Translational Research ◽  
Social Needs ◽  
Health Priorities ◽  
Health Improvement ◽  
Evaluation Tool ◽  
Community Members ◽  
Community Based Research ◽  
Clinical And Translational Research

OBJECTIVES/SPECIFIC AIMS: As the sole Clinical and Translational Science Award (CTSA) site in Michigan, the Michigan Institute for Clinical & Health Research (MICHR) at the University of Michigan (UM) is working to develop community networks that drive clinical and translational research on community-identified health priorities. METHODS/STUDY POPULATION: These CBRNs will be modeled from successful work that has been accomplished in Jackson, MI where stakeholders from the local healthcare community, County Health Department, Health Improvement Organization, and grassroots community members created a Community of Solution to address the unmet behavioral health and social needs of community members. The CBRN’s will focus on identifying community health priorities by receiving input from community members in underserved communities using deliberative software called Choosing All Together (CHAT). RESULTS/ANTICIPATED RESULTS: In the fall of 2017, 3 focus groups were held in Northern Michigan to identify community health priorities. The top 5 community health priorities include; (1) mental wellness, (2) long-term illness, (3) alcohol and drugs, (4) air, water, and land, and (5) affording care. Additional focus groups are scheduled for the winter in 2 additional geographic areas. DISCUSSION/SIGNIFICANCE OF IMPACT: Future work for the creation of CBRNs includes building leadership groups comprised of clinicians, community leaders, public health leaders, health system leaders and researchers to inform the leadership groups of community-identified health priorities. In addition, the team is working to identify a platform to connect academic investigators across UM and community partners on shared research priorities in real time. In order to measure and map relationships within the networks, we are planning to utilize Social Network Analysis as an evaluation tool.

scholarly journals 2087 Tool to assess opportunities to augment health literacy and culturally responsive components of research design to enhance diverse engagement

2018 ◽  
Vol 2 (S1) ◽  
pp. 75-76
Author(s):  
Grisel Robles-Schrader ◽  
Ashley Sipocz ◽  
Evelyn Cordero ◽  
Gina Curry
Keyword(s):  
Focus Groups ◽  
Translational Research ◽  
Assessment Tool ◽  
Research Process ◽  
Community Partners ◽  
Research Teams ◽  
Research Participants ◽  
Community Stakeholders ◽  
Diverse Communities ◽  
Clinical And Translational Research

OBJECTIVES/SPECIFIC AIMS: The goals of this project are to: (1) Help research teams better understand, anticipate, and adapt research to address the needs of diverse communities. (2) Help clinicians and researchers develop patient-centered communication skills needed for more frequent and meaningful engagement of research participants. (3) Identify additional service support needs of clinical research teams not currently offered by other centers (e.g., translation services by certified translators, access to bilingual/bicultural research staff) so they can effectively recruit diverse communities. METHODS/STUDY POPULATION: Mixed methods evaluation approaches centered on obtaining community and academic input aimed at revising the tool to enhance its feasibility and relevance. Round one of focus groups were conducted (4), 2 with a diverse group of community stakeholders, 2 with a diverse group of academic stakeholders. Focus group feedback guided HLCR Assessment Tool revisions. This round of focus groups, served as an opportunity for community and academic stakeholders to discuss shared and divergent priorities related to the development and utilization of the tool. Feedback from these sessions guided a second set of revisions to the tool. Brief surveys were administered at each time point to gather participant demographic data. For the first round of focus groups with community stakeholders, 2 diverse groups totaling 19 people participated (11 female, 7 male, 1 no answer; 6 Asian/Pacific Islander, 6 Black/African American, 4 Latino/Hispanic, and 3 White/Caucasian). Participants served a variety of populations including seniors, youth, underserved, Muslim Americans, Bangladeshi, Arab, South Asian, refugees, community health centers, service organizations, 1st generation students, Latinos, multi-ethnic groups, limited English speaking, people with lupus, un/underinsured, people with HIV, Korean Americans, African Americans, and the disability community. Data pending on the first round of focus groups with academic stakeholders. All participants of the first round of focus groups will be invited to return to a second round of focus groups (2), this time only 2 groups will be held, and these will combine community and academic participants in each focus group. RESULTS/ANTICIPATED RESULTS: Along with formatting and grammatical revisions, recurring recommendations focused on considerations/clarifications in 3 main areas: compensation for all stakeholders, developing a common language and clarifying terms, and aligning the research process with the community. Considerations around compensation was mentioned in discussions related to multiple tool domains. In particular, community stakeholders recommended inclusion and consideration of compensation not just for research participants but also community partners, sites, community representatives, and other academic partners. It was also very important to make sure the form of compensation for both community partners and participants aligns with what was being asked of them. Community stakeholders sited a few examples where they were involved in studies where the time and requirements for participation were not commensurate with the compensation they received or the study budget did not include compensation for community partner effort. Along with edits to questions in the HLCR Assessment Tool, community stakeholders also recommended education for budget/finance personnel on fair compensation for research participants and community partners. In both focus groups, there was also confusion around specific terms and an identified need to develop a common language and clarify terms among all those involved in the research process. More specifically, terms such as community, culture, community of focus, community partners, accessible, and convenient were identified as needing further definition or clarification. Through the focus groups, we learned the valuable lesson that it cannot be assumed broad terms or even seemingly specific ones will be interpreted the same by everyone or have the same meaning in different contexts. Therefore, it needs to be very clear what these terms mean and who or what they represent. Finally, the community stakeholders emphasized throughout both focus groups the importance of making sure that the HLCR Assessment Tool unpack and explicitly emphasize how the research process can align and should align with community needs, communication structures, influencers, and assets. Some factors community stakeholders suggested be considered were: (1) Where the researcher is in the research process; (2) How community members prefer to communicate with each other; (3) Stigma/biases (e.g., class) that may be pervasive in a particular community; (4) Identification of key community influencers/gatekeepers; (5) Learning about a community’s assets along with their needs. DISCUSSION/SIGNIFICANCE OF IMPACT: Currently, there is dearth of resources focused on increasing diverse engagement in clinical and translational research, and consequently, research teams have little or no knowledge or support for how or when to engage community partners in clinical or translational research. The goal of this project is to help fill that gap with a tool to guide clinical and translational research teams in assessing the health literacy and culturally responsive components of their research projects to improve recruitment of diverse populations. Feedback on the first iteration of the HLCR Assessment Tool helped us identify the priorities for community stakeholders and better understand their concerns and needs around engagement with academic partners in clinical and translational research. This understanding will help us enhance the relevance and usefulness of the HLCR Assessment Tool so that clinical and translational science researchers more effectively engage with community partners and help ensure the community’s needs are better aligned with. Therefore, developing and pilot testing this tool can offer a significant opportunity for clinical and translational sciences institutions to enable their researchers and their teams to teams better understand, anticipate, and adapt to the cultural and health literacy needs of diverse populations. More specifically, this tool can: (1) Help clinicians develop the patient-centered communication skills needed to facilitate more frequent and meaningful engagement of potential research participants during medical visits to truly make every healthcare encounter an opportunity for research. (2) Help clinical and translational sciences institutes identify additional service support clinical research teams will need access to in order to effectively recruit diverse communities, that are not currently not supported [e.g., translation services by certified translators, access to bilingual/bicultural research staff at all level (i.e., study coordinators, research assistants, etc.), etc.].

scholarly journals Community-Engaged Research to Develop a Chicago Violence Research Agenda and Recommendations to Support Future Community Engagement

2021 ◽  
Author(s):  
Alexander Ellyin ◽  
Kelli Day ◽  
Jacqueline Samuel ◽  
Tami Bartell ◽  
Dion McGill ◽  
...  
Keyword(s):  
Violence Prevention ◽  
Community Engagement ◽  
Research Agenda ◽  
Academic Community ◽  
Future Research ◽  
Prevention Research ◽  
Community Members ◽  
Community Factors ◽  
Community Stakeholders

Abstract Background: Chicago has a history of gun violence with some neighborhoods, particularly Black and Brown communities, being disproportionately affected and Black male youth experiencing an even more disparate impact. Too often, violence prevention research is developed and carried out with little or no input from the people living in the most affected communities. The objective of the Community-Academic Collaboration to Prevent Violence in Chicago (CACPVC) was to bring together individuals from impacted communities with academic researchers and other community stakeholders to discuss violence and co-create a research agenda that addresses topics of mutual concern, and recommendations for engaging stakeholders including community members and organizations and funders in violence and violence prevention research.Methods: From 2014 to 2015, community members and organizations from seven defined regions across Chicago were recruited to participate. An organization network gathering was held in each region for researchers, funders, and community organization representatives to discuss violence prevention. Open community forums then took place in each community. Violence data by region was shared followed by facilitated group discussions that were recorded by youth scribes. Notes were thematically coded, grouped, and compiled after which a list of topics was refined by the CACPVC Work Group, allowing for investigator triangulation. A survey was disseminated to community stakeholders to prioritize the topics. Results: Seven network gatherings (127 attendees) and community forums (133 attendees) were held. Topic areas identified during the gatherings and forums included root causes/cycle of violence, racism and bias/structural violence, trajectory of violence, protective factors and nonviolence, geographic pattern change, violence prevention strategies, youth, family factors, community factors, school, police, gangs/street organizations, and media and public perceptions. Recommendations to support community engagement were grouped as role of research in reducing violence, role of community in violence research, relationships and respect, academic-community communication, financial considerations, training, practical considerations, research design, sharing results, communication about and use of data, and recommendations for funders.Conclusions: The violence research agenda will be used to inform community-engaged violence prevention research. The recommendations for community engagement provide a resource for researchers about topics to consider to meaningfully engage community members in future research.

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