Evidence map›Paper›PMID 41504746›Full record

ArticleMedical care2026

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

Greg Merritt, Ava Zebrick, Bill Stephens, Crispin Goytia, Melissa Bronson, Nadine Zemon, Neely Williams, Shirley Stowe

Abstract read
In one paragraph

Article in Medical care, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

3 citing papers in PubMed.

  1. Article
  2. Article
  3. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors.

Greg MerrittPaTH Clinical Research Network, Pittsburgh, PA.
Ava ZebrickREACHnet Clinical Research Network, New Orleans, LA.
Bill StephensGPC Clinical Research Network, Columbia, MO.
Crispin GoytiaINSIGHT Clinical Research Network, New York, NY.
Melissa BronsonPEDSnet Clinical Research Network, Philadelphia, PA.
Nadine ZemonOneFlorida+ Clinical Research Network, Gainesville, FL.
Neely WilliamsSTAR Clinical Research Network, Nashville, TN.
Shirley StoweADVANCE Clinical Research Network, Portland, OR.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

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 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 is essential for advancing health outcomes and achieving a truly patient-partnered research ecosystem.

Indexed as

Biomedical ResearchPatient Outcome AssessmentPatient ParticipationHumansPatient-Centered Careclinical researchhealthcare innovationkindness in researchpatient-centered outcomes researchpatient engagementpatient partnership

Identifiers

PMID41504746
PMCPMC12783336

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.