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

Background Patient reported outcome measures (PROMs) are standardised questionnaires completed by patients to measure health related quality of life (QoL). It is unclear how this data is accessed by patients or clinicians and how it should be presented to optimise 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 PROMs 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 approximately 1 hour. Participants Thirteen participants from 3 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 4 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 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.