ArticleResearch involvement and engagement2026
Embedding the public voice in clinical trials: developing public-informed training for patient data research.
Article in Research involvement and engagement, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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.
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.
Who cites it
0 citing papers in PubMed.
No citing paper in PubMed yet.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
24 authors.
Funding
Abstract
backgroundThe use of health systems data (HSD) such as patient records and prescriptions is expanding within clinical trials to improve efficiency, reduce participant burden, and enhance real‑world relevance. However, challenges remain around governance, data quality, transparency and public trust, echoed through discussions in this project. While Patient and Public Involvement and Engagement is increasingly embedded in trial design, involvement in methodological and data‑focused areas remains limited. Ensuring that HSD trial training for researchers and public reflects public perspectives is therefore important.
methodsThis work was conducted within HDR UK's Transforming Data for Trials programme. A Participatory Health Research (PHR) approach was used to develop training resources for the HDR UK Futures online learning platform. A UK‑wide Public Advisory Group (PAG) was recruited through national involvement networks. Engagement took place through virtual full-PAG and small-working‑group meetings. PAG members were involved in identifying priorities, shaping content, reviewing materials and recording videos. Two case studies illustrate different approaches to involvement: co‑production throughout development of a public‑facing module and consultative input to a researcher‑focused module.
resultsThe PAG comprised 25 members with diverse geographical and experiential backgrounds. Case Study 1: members helped develop eight short videos for public partners. They influenced topic selection, tone, language and accessibility of scripts; six members also participated in filming. Their input led to clearer explanations of topics including data governance, consent and trust, with content presented in plain English and modular formats. Case Study 2: PAG members provided feedback on a technical training module on Data Utility Comparison Studies which compare the usefulness of different data sources. Their feedback highlighted concerns about data accuracy, transparency and potential equity implications, prompting refinements to the framing and examples used within the module. DISCUSSION: Co‑production supported the development of accessible resources for public research partners, while consultative input helped ensure researcher‑focused training addressed issues relevant to public trust and accountability. These approaches demonstrate how public perspectives can strengthen training related to HSD trial methodology.
conclusionEmbedding public perspectives in HSD training development could enhance relevance, accessibility and trust. This work provides a practical model for involving public contributors in methodological training within trials.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
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.