Evidence map›Paper›PMID 42573899›Full record

ReviewThe patient2026

Strengthening Value Assessment and Health Economics and Outcomes Research Proposals Through Patient Engagement: Guidelines for Researchers.

Elizabeth F Franklin, Benjamin M Craig, Justin Hopkin, Annie Kennedy, Sara Loud, Maria E Santaella, Hollie Schmidt, Wendy Smith Begolka, Sally Werner, Emily M Ortman and 1 more

Abstract readReview
PubMed Publisher
In one paragraph

Review in The patient, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing 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

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

11 authors.

Elizabeth F FranklinUS Public Affairs & Patient Advocacy, Oncology, Sanofi, Washington, DC, USA.
Benjamin M CraigDepartment of Economics, University of South Florida, Tampa, FL, USA.
Justin HopkinNational Niemann-Pick Disease Foundation, Fort Atkinson, WI, USA.
Annie KennedyEveryLife Foundation for Rare Diseases, Washington, DC, USA.
Sara LoudAccelerated Cure Project, Waltham, MA, USA.
Maria E SantaellaNational Bleeding Disorders Foundation, New York, NY, USA.
Hollie SchmidtAccelerated Cure Project, Waltham, MA, USA.
Wendy Smith BegolkaNational Eczema Association, Novato, CA, USA.
Sally WernerCancer Support Community, Washington, DC, USA.
Emily M OrtmanPhRMA Foundation, Washington, DC, USA.
Amy M MillerPhRMA Foundation, Washington, DC, USA. amiller@phrmafoundation.org.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Patient engagement in value assessment and health economics and outcomes research (HEOR) must be meaningful and authentic, not simply patient participation as study subjects. This article provides researchers with guidelines for incorporating patient engagement in value assessment and HEOR grant proposals. In the USA, the Patient-Centered Outcomes Research Institute (PCORI) offers six "foundational expectations" for partnerships in research: representative involvement, early and ongoing engagement, building capacity to work as a team, dedicated funds for engagement and partner compensation, meaningful inclusion in decision-making, and ongoing review and assessment. To these, we added two more expectations-informational exchange and mutual learning, and benefit to patients and involved groups-which emphasize the outcomes of active engagement. For each of the eight expectations, we provide recommendations that inform how research proposals can demonstrate them in the most appropriate manner. While including all eight expectations may not be feasible in every proposal, the framework encourages researchers to advance patient-centered research practices progressively. These guidelines aim to motivate researchers toward including more meaningful and authentic forms of patient engagement in their proposals, ultimately strengthening the quality and patient-centeredness of value assessment and HEOR projects, while fostering collaboration between researchers and patient communities.

Identifiers

PMID42573899

What Socratic holds

Textmetadata
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 Socratic graph.