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

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.].

2008 ◽  
Vol 89 (4) ◽  
pp. 512-520 ◽  
Author(s):  
David S. Crampton ◽  
Thomas M. Crea ◽  
Anne Abramson-Madden ◽  
Charles L. Usher

Team Decisionmaking (TDM) involves a meeting of community representatives, family members, and social workers who review every decision to remove children from their parents or change of placement, including reunification or adoption. Even when the leadership of child welfare organizations mandates the use of TDM, implementing TDM is very challenging. To understand these challenges, a research team visited five diverse communities and conducted 74 focus groups and interviews involving 180 administrators, caseworkers, community partners, supervisors, and TDM facilitators. This article reviews the findings of this TDM study through previous research on street-level bureaucracy and technology transfer. The results suggest successful TDM implementation requires attention to the discretion of street-level caseworkers and the organizational constraints they face.


2011 ◽  
Vol 22 (4A) ◽  
pp. 165-173 ◽  
Author(s):  
Alexander Quarshie ◽  
Adam Davis ◽  
Gregory Strayhorn ◽  
Carolyn Weaver ◽  
Cigdem Delano ◽  
...  

2018 ◽  
Vol 2 (S1) ◽  
pp. 75-75 ◽  
Author(s):  
Laurie L. Novak ◽  
Sheba George ◽  
Kenneth Wallston ◽  
Yolanda Vaughn ◽  
Tiffany Israel ◽  
...  

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.


2018 ◽  
Vol 2 (4) ◽  
pp. 201-207 ◽  
Author(s):  
Yvonne A. Joosten ◽  
Tiffany L. Israel ◽  
Amy Head ◽  
Yolanda Vaughn ◽  
Victoria Villalta Gil ◽  
...  

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.


2018 ◽  
Vol 2 (S1) ◽  
pp. 65-66
Author(s):  
Meghan Spiroff ◽  
Patricia Piechowski ◽  
Karen D. Calhoun ◽  
Susan Goold ◽  
Ayse Buyuktur ◽  
...  

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.


2005 ◽  
Vol 19 (4) ◽  
pp. 367-386 ◽  
Author(s):  
Wendy Frisby ◽  
Colleen J. Reid ◽  
Sydney Millar ◽  
Larena Hoeber

Although there has been a rise in calls for participatory forms of research, there is little literature on the challenges of involving research participants in all phases of the research process. Actively involving research participants requires new strategies, new researcher and research-participant roles, and consideration of a number of ethical dilemmas. We analyzed the strategies employed and challenges encountered based on our experiences conducting feminist participatory action research with a marginalized population and a variety of community partners over 3 years. Five phases of the research process were considered including developing the research questions, building trust, collecting data, analyzing data, and communicating the results for action. Our goals were to demonstrate the relevance of a participatory approach to sport management research, while at the same time acknowledging some of the realities of engaging in this type of research.


2019 ◽  
Vol 17 (3) ◽  
pp. 125-132
Author(s):  
Nancy A. Allen ◽  
Vanessa D. Colicchio ◽  
Michelle L. Litchman ◽  
Bryan Gibson ◽  
Jeanette Villalta ◽  
...  

Introduction Community-based participatory research (CBPR) is a strategy often employed to address public health priorities. We explored how to build effective, trusting relationships with key community stakeholders and a group of Hispanic/Latinos with type 2 diabetes (T2D) to develop culturally appropriate projects. Method In the process of implementing a Patient-Centered Outcome Research Initiative (PCORI) award, our Community Advisory Board (CAB) met monthly to develop a set of comparative effectiveness research questions along with the interventions to develop specific strategies to improve Hispanic/Latino individuals’ self-management of T2D. An agenda was prepared for each meeting targeting the PCORI grant timeline. Notes were taken during these meetings and analyzed to determine effective strategies. Results Ten strategies were identified that led to the success of this CBPR project and to the current sustainability phase. Instrumental to our success was our partnership with a community health worker (CHW) who co-lead this research project. The CHW and CAB individualized general CBPR strategies to make this project successful in their community. Conclusion Our community partners became influential knowledge holders throughout this research process. They improved researchers’ understanding of how to address the needs of Hispanic/Latino individuals with T2D and how community members could become leaders within their community.


Author(s):  
LaKaija J. Johnson ◽  
Jolene Rohde ◽  
Mary E. Cramer ◽  
Lani Zimmerman ◽  
Carol R. Geary ◽  
...  

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