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      Public feedback on a proposed statewide virtual translational research community

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          Abstract

          Introduction:

          Researchers have explored using the internet and social media to recruit participants to specific research projects. Less systematic work has been done to inform the engagement of large populations in virtual communities to advance clinical and translational science. We report on our first step to use social media to engage Minnesota residents by studying the willingness of participants to engage in a virtual (Facebook) community about the concepts of health and health-related research.

          Methods:

          Data were collected at the 2018 Minnesota State Fair using a cross-sectional, 46-item survey with assessment including sociodemographics and willingness to engage in a Facebook group for health-related research. Quantitative analysis included univariate, bivariate, and multivariate analyses. Content analysis was used to generate themes from open-ended survey responses.

          Results:

          Five hundred people completed the survey; after data cleaning, 418 participant responses informed this report. A majority were younger than age 50 (73%), female (66%), and married/partnered (54%). Overall, 46% of participants agreed/strongly agreed they are willing to join the Facebook group. Multivariate logistic regression identified social media use over the past 6 months as the sole variable independently associated with willingness to join the Facebook group (once a day vs. never or rarely OR = 1.82 (0.86, 3.88), several hours a day vs. never or rarely OR = 2.17 (1.17, 4.02, overall p-value 0.048).

          Conclusion:

          Facebook holds potential for reaching a broader community, democratizing access to and engagement with clinical and translational research. Social media infrastructure and content could be disseminated to other institutions with Clinical and Translational Science Awards.

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          Most cited references19

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          A Coefficient of Agreement for Nominal Scales

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            The Single Item Literacy Screener: Evaluation of a brief instrument to identify limited reading ability

            Background Reading skills are important for accessing health information, using health care services, managing one's health and achieving desirable health outcomes. Our objective was to assess the diagnostic accuracy of the Single Item Literacy Screener (SILS) to identify limited reading ability, one component of health literacy, as measured by the S-TOFHLA. Methods Cross-sectional interview with 999 adults with diabetes residing in Vermont and bordering states. Participants were randomly recruited from Primary Care practices in the Vermont Diabetes Information System June 2003 – December 2004. The main outcome was limited reading ability. The primary predictor was the SILS. Results Of the 999 persons screened, 169 (17%) had limited reading ability. The sensitivity of the SILS in detecting limited reading ability was 54% [95% CI: 47%, 61%] and the specificity was 83% [95% CI: 81%, 86%] with an area under the Receiver Operating Characteristics Curve (ROC) of 0.73 [95% CI: 0.69, 0.78]. Seven hundred seventy (77%) screened negative on the SILS and 692 of these subjects had adequate reading skills (negative predictive value = 0.90 [95% CI: 0.88, 0.92]). Of the 229 who scored positive on the SILS, 92 had limited reading ability (positive predictive value = 0.4 [95% CI: 0.34, 0.47]). Conclusion The SILS is a simple instrument designed to identify patients with limited reading ability who need help reading health-related materials. The SILS performs moderately well at ruling out limited reading ability in adults and allows providers to target additional assessment of health literacy skills to those most in need. Further study of the use of the SILS in clinical settings and with more diverse populations is warranted.
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              Community Engagement Studios: A Structured Approach to Obtaining Meaningful Input From Stakeholders to Inform Research

              Problem Engaging 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. Approach In 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. Outcomes The 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 Steps The 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.
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                Author and article information

                Journal
                J Clin Transl Sci
                J Clin Transl Sci
                CTS
                Journal of Clinical and Translational Science
                Cambridge University Press (Cambridge, UK )
                2059-8661
                October 2020
                12 September 2019
                : 4
                : 5
                : 416-424
                Affiliations
                [1 ]Department of Family Medicine and Community Health, University of Minnesota , Minneapolis, MN, USA
                [2 ]Center and Translational Science Institute, Academic Health Center, University of Minnesota , Minneapolis, MN, USA
                [3 ]Center for Clinical and Translational Sciences, Mayo Clinic , Rochester, MN, USA
                [4 ]Department of Health Sciences Research, Mayo Clinic, Rochester, MN, USA
                [5 ]Mayo Clinic College of Medicine and Science , Rochester, MN, USA
                Author notes
                Address for correspondence: M. Eder, PhD, University of Minnesota, 717 Delaware St SE, Minneapolis, MN 55414, USA. Email: meder@ 123456umn.edu
                Author information
                https://orcid.org/0000-0002-4036-6491
                Article
                S2059866119004175
                10.1017/cts.2019.417
                7681157
                0ae70ae5-2ad0-4bc1-b56e-dd18fda5fc16
                © The Association for Clinical and Translational Science 2019

                This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : 17 April 2019
                : 05 September 2019
                : 07 September 2019
                Page count
                Figures: 1, Tables: 4, References: 29, Pages: 9
                Categories
                Research Article
                Implementation, Policy and Community Engagement

                social media,community engagement,translational science,clinical trials,recruitment

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