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Study to explore patient views of PROm data access, use, and VISualisatION (PROVISION): the PROVISION study

Laura Knight Orcid Logo, Kathleen Withers, Michael Beddard Orcid Logo, Christina Lloydwin Orcid Logo, Judith White Orcid Logo, Sarah Puntoni Orcid Logo, Sally Lewis Orcid Logo

IJQHC Communications, Volume: 6, Issue: 1

Swansea University Author: Sally Lewis Orcid Logo

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DOI (Published version): 10.1093/ijcoms/lyag012

Abstract

Background: Patient-reported outcome measures (PROMs) are standardised questionnaires completed by patients to measure health-related quality of life. It is unclear how these data are accessed by patients or clinicians and how it should be presented to optimize its use.Objective: The aim of this stu...

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Published in: IJQHC Communications
ISSN: 2634-5293
Published: Oxford University Press (OUP) 2026
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URI: https://cronfa.swan.ac.uk/Record/cronfa71962
Abstract: Background: Patient-reported outcome measures (PROMs) are standardised questionnaires completed by patients to measure health-related quality of life. It is unclear how these data are accessed by patients or clinicians and how it should be presented to optimize its use.Objective: The aim of this study is to explore patient perspectives on PROM data access and visualisation.Design: A qualitative focus group study design was used. A topic guide was utilised throughout the focus groups with participants sent exemplar graphs to review beforehand to facilitate discussion around PROM visualisation.Setting: Participants were recruited from a tertiary care hospital and via social media between January 2023 and May 2024. All focus groups took place via Microsoft Teams and lasted ∼1 h.Participants: Thirteen participants from three clinical specialties (epilepsy, heart failure, and hip arthroplasty) and an additional group with any long-term condition requiring consultant led care were recruited and took part across four focus groups.Main Outcome Measure(s): Patient perspectives relating to PROM data access and method of data visualisation.Results: Access to PROM data was seen as beneficial. Accessibility in terms of technology use and readability of results was seen as a priority by participants. Therefore, the simpler visualisations used (e.g. bar charts) were seen as the preferred option compared to more complicated spider diagrams. Most felt that it would be preferable for their data to be discussed with a member of their care team, which would be important for those who could not access their data for technology and language reasons.Conclusions: Access and discussion of PROM data was seen as beneficial and could potentially aid in making positive changes to health behaviour. However, it needs to be accessible to all in terms of physical access (i.e. via email or an app) but also readability of results.
Keywords: PROM data visualisation, data accessibility, patient perspectives
College: Faculty of Humanities and Social Sciences
Funders: This study was funded from an ongoing contract between CEDAR and Value Transformation (formerly the Welsh Value in Health Centre), part of NHS Wales Performance and Improvement.
Issue: 1