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      Using REDCap to track stakeholder engagement: A time-saving tool for PCORI-funded studies

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          Abstract

          Background:

          Research Electronic Data Capture (REDCap) is a secure, web-based electronic data capture application for building and managing surveys and databases. It can also be used for study management, data transfer, and data export into a variety of statistical programs. REDcap was developed and supported by the National Center for Advancing Translational Sciences Program and is used in over 3700 institutions worldwide. It can also be used to track and measure stakeholder engagement, an integral element of research funded by the Patient-Centered Outcomes Research Institute (PCORI). Continuously and accurately tracking and reporting on stakeholder engagement activities throughout the life of a PCORI-funded trial can be challenging, particularly in complex trials with multiple types of engagement.

          Methods:

          In this paper, we show our approach for collecting and capturing stakeholder engagement activities using a shareable REDCap tool in one of the PCORI’s first large pragmatic clinical trials (the Comprehensive Post-Acute Stroke Services) to inform other investigators planning cluster-randomized pragmatic trials. Benefits and challenges are highlighted for researchers seeking to consistently monitor and measure stakeholder engagement.

          Conclusions:

          We describe how REDCap can provide a time-saving approach to capturing how stakeholders engage in a PCORI-funded study and reporting how stakeholders influenced the study in progress reports back to PCORI.

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          Most cited references1

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          Patient Engagement In Research: Early Findings From The Patient-Centered Outcomes Research Institute

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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
            April 2020
            06 February 2020
            : 4
            : 2
            : 108-114
            Affiliations
            [1 ]Department of Social Sciences and Health Policy and Department of Implementation Science, Wake Forest School of Medicine , Winston-Salem, NC, USA
            [2 ]Department of Family Medicine, University of North Carolina School of Medicine at Chapel Hill , Chapel Hill, NC, USA
            [3 ]Department of Epidemiology, Gillings School of Global Public Health, University of North Carolina at Chapel Hill , Chapel Hill, NC, USA
            [4 ]Department of Neurology, Wake Forest School of Medicine , Winston-Salem, NC, USA
            [5 ]Brody School of Medicine, East Carolina University , Greenville, NC, USA
            Author notes
            Address for correspondence: S. B. Gesell, PhD, Department of Social Sciences and Health Policy and Department of Implementation Science, Wake Forest School of Medicine, One Medical Center Boulevard , Winston-Salem, NC27157, USA. Email: sgesell@ 123456wakehealth.edu
            Author information
            https://orcid.org/0000-0002-1997-9816
            Article
            S2059866119004448
            10.1017/cts.2019.444
            7159814
            32313700
            8c6c2157-ba75-4a20-be39-8d88bb8692b6
            © The Association for Clinical and Translational Science 2020

            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
            : 03 October 2019
            : 20 November 2019
            : 04 December 2019
            Page count
            Figures: 4, Tables: 1, References: 15, Pages: 7
            Categories
            Research Article
            Implementation, Policy and Community Engagement

            community-based participatory research,research design,comparative effectiveness research,patient engagement,pragmatic clinical trial,stroke

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