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Methods guiding stakeholder engagement in planning a pragmatic study on changing stroke systems of care

  • Sabina B. Gesell (a1), Karen Potvin Klein (a2), Jacqueline Halladay (a3), Janet Prvu Bettger (a4), Janet Freburger (a5), Doyle M. Cummings (a6), Barbara J. Lutz (a7), Sylvia Coleman (a8), Cheryl Bushnell (a9), Wayne Rosamond (a10), Pamela W. Duncan (a11) and COMPASS Study Investigators...

Abstract

Background: The Comprehensive Post-Acute Stroke Services (COMPASS) Study is one of the first large pragmatic randomized-controlled clinical trials using comparative effectiveness research methods, funded by the Patient-Centered Outcomes Research Institute. In the COMPASS Study, we compare the effectiveness of a patient-centered, transitional care intervention versus usual care for stroke patients discharged home from acute care. Outcomes include stroke patient post-discharge functional status and caregiver strain 90 days after discharge, and hospital readmissions. A central tenet of Patient-Centered Outcomes Research Institute-funded research is stakeholder engagement throughout the research process. However, evidence on how to successfully implement a pragmatic trial that changes systems of care in combination with robust stakeholder engagement is limited. This combination is not without challenges. Methods: We present our approach for broad-based stakeholder engagement in the context of a pragmatic trial with the participation of patients, caregivers, community stakeholders, including the North Carolina Stroke Care Collaborative hospital network, and policy makers. To maximize stakeholder engagement throughout the COMPASS Study, we employed a conceptual model with the following components: (1) Patient and Other Stakeholder Identification and Selection; (2) Patient and Other Stakeholder Involvement Across the Spectrum of Research Activities; (3) Dedicated Resources for Patient and Other Stakeholder Involvement; (4) Support for Patient and Other Stakeholder Engagement Through Organizational Processes; (5) Communication with Patients and Other Stakeholders; (6) Transparent Involvement Processes; (7) Tracking of Engagement; and (8) Evaluation of Engagement. Conclusion: In this paper, we describe how each component of the model is being implemented and how this approach addresses existing gaps in the literature on strategies for engaging stakeholders in meaningful and useful ways when conducting pragmatic trials.

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Copyright

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.

Corresponding author

*Address for correspondence: S. B. Gesell, Ph.D., Department of Social Sciences and Health Policy, Wake Forest School of Medicine, One Medical Center Boulevard, Winston-Salem, NC 27157, USA. (Email: sgesell@wakehealth.edu)

References

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Methods guiding stakeholder engagement in planning a pragmatic study on changing stroke systems of care

  • Sabina B. Gesell (a1), Karen Potvin Klein (a2), Jacqueline Halladay (a3), Janet Prvu Bettger (a4), Janet Freburger (a5), Doyle M. Cummings (a6), Barbara J. Lutz (a7), Sylvia Coleman (a8), Cheryl Bushnell (a9), Wayne Rosamond (a10), Pamela W. Duncan (a11) and COMPASS Study Investigators...

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