1. PROGRESS: A patient-centered engagement infrastructure and multi-level approach to enrich diversity, equity, and inclusion in a national randomized online behavioral pain treatment study.
- Author
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Clifton J, Adair E, Cheung M, Torres C, Andrews W, Dorsonne B, Hailu AY, Heggan E, Miefert J, Riazi G, Dildine TC, Spears S, Greer-Smith R, Pun T, Williams N, Perez L, King HP, Ziadni MS, Mackey S, and Darnall BD
- Abstract
Twenty percent of individuals experience chronic pain worldwide posing significant challenges to those living with it. Pain research is crucial for developing and characterizing effective strategies to reduce the burden of chronic pain. Traditional research approaches often yield homogeneous study samples that poorly generalize and have unknown applicability across diverse patient populations. The Pain Relief with Online Groups that Empower Skills-based Symptom Reduction (PROGRESS) study aims to address disparities in pain research engagement and patient outcomes through the intentional inclusion of people with varied backgrounds and experiences of pain, and through a multilevel design informed by diverse stakeholder recommendations. The composition of three advisory boards (Patient Engagement and Diversity Board, Local Patient Advisory Board, and the National Patient Advisory Panel) prioritized diversity in patient/expert advisor background, geographic location, race, and ethnicity. Our engagement approach aligns with the Foundational Expectations for Partnerships in Research by Patient-Centered Outcomes Research Institute (PCORI), which emphasizes diverse representation, early and ongoing engagement, dedicated funds for advisor compensation, collaborative decision making, meaningful participation, and continuous assessment. The first 24 months of study advisor engagement has yielded multiple recruitment strategies resulting in a study population enriched with a breadth of identities within PROGRESS (e.g., inclusive patient-facing materials). Lessons learned underscore the importance of investing time in building patient and stakeholder relationships, trust, and embracing diverse viewpoints amongst the study team. PROGRESS demonstrates the potential of diverse patient-centered engagement to support evidence-based outcomes and practices that are more inclusive, equitable, and representative of the broader population. PERSPECTIVE: The PROGRESS study demonstrates how diverse patient engagement and inclusive advisory boards enhance research outcomes. By aligning with PCORI standards and employing innovative recruitment strategies, it highlights the vital role of stakeholder relationships and diverse perspectives. Key lessons learned emphasize adaptive strategies and continuous feedback for advancing equitable pain research., Competing Interests: Declaration of Competing Interest Empowered Relief® is owned and copyrighted by Stanford University. Dr. Darnall receives no fees from Empowered Relief or from the Stanford CME clinician certifications workshops. Dr. Darnall is Chief Science Advisor at AppliedVR and she receives consulting fees for this role (unrelated to the current work). Dr. Darnall receives royalties for four pain treatment books she has authored or coauthored. She is the principal investigator for two pain research awards from the PCORI and is principal investigator for two NIH grants, each of which investigates either 8-session CBT, Empowered Relief®, or both. Dr. Darnall is on the Board of Directors for the Institute for Brain Potential, and is on the Medical Advisory Board for the Facial Pain Association. Dr. Darnall is a scientific member of the NIH Interagency Pain Research Coordinating Committee, a member of the ACOEM chronic pain guidelines committee, a former member of the Centers for Disease Control and Prevention Opioid Workgroup (2020–2021), and a current member of the Pain Advisory Group of the American Psychological Association. All other authors have no conflicts of interest to disclose. Dr. Mackey receives research funding from the NIH, Food and Drug Administration, and Patient-Centered Outcomes Research Institute (administered through Stanford University). He is an unpaid advisor to both ACTTION (Analgesic, Anesthetic, and Addiction Clinical Trial Translations, Innovations, Opportunities, and Networks) on their oversight committee, and the American Chronic Pain Association (ACPA) for their scientific oversight., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)
- Published
- 2024
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