Patient Voices Leading Change - A Call to Action for Careful, Kind, and Connected Patient-Partnered Research in PCORnet®

Sep 30, 2026

Patient partners serving on the PCORnet® Steering Committee advocate for a fundamental shift in how health research engages patients. They highlight progress in operationalizing PCORI’s Framework for Patient Engagement and emphasize PCORnet® Network Partners’ role in integrating patient voices across research. Grounded in reflections and evidence from the literature, the commentary calls for deeper, more authentic partnership throughout all stages of clinical research, framing research as “careful, kind, and connected.”

LanguageEnglish

CategoryHealthcare

FormatPDF

Pages5

Reading Time13 min

AccessFree to download

Abstract

Background and purpose

Call for deeper patient engagement

PCORnet® network and partners

COMMENTARY Patient Voices Leading Change A Call to Action for Careful, Kind, and Connected Patient-Partnered Research in PCORnet® Greg Merritt, PhD, * Ava Zebrick, MSHCM,† Bill Stephens, MSHCM,‡ Crispin Goytia, MA,§ Melissa Bronson, MA,‖ Nadine Zemon, RN,¶ Neely Williams, MDiv, EdD(c),\# and Shirley Stowe, RN** Abstract: As the 8 patient partners serving on the PCORnet® Steering Committee, we stand at the forefront of a transformative movement in clinical research. PCORnet® Network Partners have been pioneers in integrating patient voices into every aspect of the research process, and we applaud the progress in operationalizing the Patient-Centered Outcomes Research Institute’s (PCORI) Framework for Patient Engagement and for leading the way as funders to change how to effectively involve patients and other interested parties in research. However, we believe that now is the time to amplify our efforts and call for a fundamental shift in how health research is conducted across the board. This commentary serves as both a reflection on our journey and a rallying cry for deeper, more authentic patient engagement and partnership in clinical research. The landscape of clinical research has undergone significant changes over the From the *PaTH Clinical Research Network, Pittsburgh, PA; †REACHnet Clinical Research Network, New Orleans, LA; ‡GPC Clinical Research Network, Columbia, MO; §INSIGHT Clinical Research Network, New York, NY; ‖PEDSnet Clinical Research Network, Philadelphia, PA; ¶OneFlorida+ Clinical Research Network, Gainesville, FL; \#STAR Clinical Research Network, Nashville, TN; and **ADVANCE Clinical Research Network, Portland, OR All authors are Patient Partners participating in PCORnet® .G.M. receives funding through the PCORI-funded PaTH Clinical Research Network (RI-PITT-01-PS8) . A.Z. receives funding through the PCORI-funded REACHnet Clinical Research Network (RI-LPHI-01-PS8) . [B.S. fund](B.S. fund)ing through the PCORI-funded GPC Clinical Research Network (RIMISSOURI-01-PS8) . C.G. receives funding through the PCORIfunded INSIGHT Clinical Research Network (RI-CORNELL-01-PS8) . M.B. receives funding through the PCORI-funded PEDSnet Clinical Research Network (RI-CHOP-01-PS10) . N.Z. receives funding through the PCORI-funded OneFlorida+ Clinical Research Network (RI-FLORIDA-01-PS8) . N.W. receives funding through the PCORIfunded STAR Clinical Research Network (RI-VUMC-01-PS9 . S.S. receives funding through the PCORI-funded ADVANCE Clinical Research Network (RI-OCHIN-01-PS8) .The authors declare no conflict of interest. Correspondence to: Greg Merritt, PhD, 4811 Pine Eagles Drive, Brighton, MI 48116. E-mail: [greg@patientispartner.com](greg@patientispartner.com). Copyright © 2026 The Author(s) . Published by Wolters Kluwer Health, Inc. This is an open access article distributed under the terms of the Creative Commons Attribution-Non Commercial-No Derivatives License 4.0 (CCBY-NC-ND), where it is permissible to download and share the work provided it is properly cited. The work cannot be changed in any way or used commercially without permission from the journal. DOI: 10. 1097/MLR.0000000000002264 past decade, with patient engagement emerging as a cornerstone of patient-centered outcomes research. This shift is evidenced by major funding agencies now requiring patient engagement and a growing body of literature demonstrating improved study quality, recruitment, and relevance when patients are engaged as partners. As patient partners participating in PCORnet®, we have been at the forefront of this evolution, witnessing firsthand the progress made and the challenges and learnings that remain. Drawing on our experiences and evidence from the literature, we propose strategies to enhance patient involvement across all stages of research. We introduce and explore the concept that clinical research should be “careful, kind, and connected.” Our reflections underscore that meaningful patient involvement

FAQs

What is the main purpose of the commentary?

It reflects on patient partners’ journey within PCORnet® and calls for a fundamental shift toward deeper, more authentic patient engagement and partnership across clinical research.

What does the commentary emphasize about patient engagement in health research?

It stresses that meaningful patient involvement is essential for improving health outcomes and for creating a patient-partnered research ecosystem.

What is PCORnet® in this context?

PCORnet® is described as a distributed national research network enabling patient-centered outcomes research, supported by Clinical Research Networks and a Coordinating Center.

Sep 30, 2026

Uploaded by Alex Sinclair