2 results
3372 Developing a REDCap Database to Understand Partnership Cultivation Efforts
- Grisel M. Robles-Schrader, Gina Curry, Josefina Serrato, Jen Brown, Keith A Herzog
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- Journal:
- Journal of Clinical and Translational Science / Volume 3 / Issue s1 / March 2019
- Published online by Cambridge University Press:
- 26 March 2019, p. 87
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OBJECTIVES/SPECIFIC AIMS:.Outline the development and purpose of the partnership brokering database in REDCap. Provide an overview of the tool and how it works. Discuss how this tool facilitates partnership-brokering activities and discuss plans for future use METHODS/STUDY POPULATION: Research Electronic Data Capture (REDCap) is a secure, web-based application developed at Vanderbilt University to assist with systematic data management of small and medium sized projects. CCH utilized REDCap to build a custom data management warehouse entitled the Partnership Brokering Tool. Information compiled in various formats (handwritten notes, spreadsheets, etc.) over the past 10 years by CCH staff, was then systematically organized and entered into the Partnership Brokering Tool. The tool captures information such as individual contact information, organizational affiliation (academic, community, faith, government etc.), research interests (35 categories - asthma, diabetes, heart disease, etc.), communities of foci (children, elderly, LGBTQ, ethnicity, etc.), and target geographic community served (Chicago north, south, suburban, Illinois, etc.). RESULTS/ANTICIPATED RESULTS: Data was compiled on 451 community groups and organizations and 77 partners in academia thus far. Community organizations represent a range of community sectors including advocacy and policy groups, community-based, faith-based organizations, foundations, media, schools, etc. throughout the Chicagoland area. Data analysis activities are underway, however, results will also be shared regarding characteristics of the communities these organizations serve including:. Age range. Special populations (as defined by the CSTI grant). Underrepresented racial and ethnic communities. DISCUSSION/SIGNIFICANCE OF IMPACT: The Partnership Brokering Tool has provided a format for CCH to systematically gather information about the relationships staff have cultivated with community groups and organizations. Unlike an email management system, this REDCap project is highly useful in capturing the parameters of our partner pool, identifying partnership gaps, and matching individuals interested in collaborating with researchers or community organizations that have a particular skill set or research interest. The Partnership Brokering Tool has also facilitated stakeholder engagement dedicated to guiding the centers’ overall goals, objectives, and programming. Finally, utilizing REDCap has streamlined efforts in reporting quantitative and qualitative data about these organizations. In the next phase of this project, CCH will utilize the database to assess the nature of the relationship between CCH and community groups and organizations.
2087 Tool to assess opportunities to augment health literacy and culturally responsive components of research design to enhance diverse engagement
- Grisel Robles-Schrader, Ashley Sipocz, Evelyn Cordero, Gina Curry
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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, pp. 75-76
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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.].