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 - 21/11/24

Doi : 10.1016/j.jpain.2024.104718

Jessica Clifton ^b, Emma Adair ^a,^⁎ , Matthias Cheung ^c, Calia Torres ^d, Wendy Andrews ^g, Brittany Dorsonne ^a, Arayam Y. Hailu ^a, Elizabeth Heggan ^e, Jackie Miefert ^h, Gabrielle Riazi ^f, Troy C. Dildine ^a, Shelly Spears ^e, Regina Greer-Smith ⁱ, Ting Pun ^j, Neely Williams ^k, Luzmercy Perez ^a, Heather P. King ^a, Maisa S. Ziadni ^a, Sean Mackey ^a, Beth D. Darnall ^a
^a Stanford University, Palo Alto, CA, USA
^b Parhelia Wellness, Santa Rosa, CA, USA
^c University of the Pacific, Stockton, CA, USA
^d The University of Alabama at Birmingham, Birmingham, AL, USA
^e Lehigh Valley Health Network, Allentown, PA, USA
^f SCAN Health Plan, Long Beach, CA, USA
^g Intermountain Health, USA
^h Humana Healthcare Research, Inc., Louisville, KY, USA
ⁱ Healthcare Research Associates, LLC, The S.T.A.R. Initiative, Apple Valley, CA, USA
^j Vi Palo Alto, Palo Alto, CA, USA
^k Community Partners Linked Network of Services, Nashville, TN, USA

^⁎Correspondence to: Department of Anesthesiology, Perioperative and Pain Medicine, Stanford University, Stanford Pain Relief Innovations Lab, USA.Department of Anesthesiology, Perioperative and Pain Medicine, Stanford University, Stanford Pain Relief Innovations LabUSA

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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.

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Highlights

●	PROGRESS, a randomized trial, tackles chronic pain with diverse patient engagement.
●	Advisory boards boost inclusivity with diverse geography, race, and expertise.
●	Engagement aligns with PCORI standards, emphasizing patient collaboration and assessment.
●	Recruitment strategies, including translated materials, support diverse patient enrollment.
●	Lessons highlight building stakeholder relationships and valuing diverse perspectives.