Short title: PROm VISualisION (PROVISION)
Full title of trial: A qualitative study using focus groups to explore patient views on the visualisation of patient-level patient-reported outcome measures (PROMs)in three exemplar clinical areas
Study design: Pilot descriptive qualitative study using focus groups with patients from 3 exemplar clinical specialities
Chief Investigator: Dr Laura Knight
Sponsor: Cardiff and Vale University Health Board
REC approval: TBC
Funding: Internal funding from the Welsh Value in Health Centre
Trial registration: TBC
Study protocol: TBC
Patient-Reported Outcome Measures (PROMs) are standardised questionnaires that are completed by patients to gather their thoughts of their condition, well-being, or their perception of their health in relation to specific diseases or conditions. The collection of PROM data is widespread across the UK and is used by clinicians, the government and in research. However, patients often complete PROM questionnaires but are not able to see or review the data once submitted, so the use of individual PROM data by patients themselves is limited.
Interest is growing in facilitating patients to interact with their PROM data to i) improve patient-clinician communication, including conversations about the likely benefit of treatment; ii) promote active patient involvement in their care; iii) improve quality of care; iv) monitor and track changes in patient outcomes; v) alert patients to episodes of harmful health decline. For the information presented in an online tool or dashboard to be useful to patients, it needs to be accurate, easily interpretable and meaningful, with appropriate context. However, little is known about what and how patients might want to visualise their PROM data.
The PROVISION (PROm VISualisION) study aims to build on what we know about the value of PROMs as an aid to patient communication by exploring patient perspectives relating to how PROMs can be visualised.
The PROVISION study is the first in a programme of research funded by the WVHC to develop evidence and tools to improve how PROM data are used in direct patient care. Cedar (Cardiff & Vale UHB) and the Welsh Value in Health Centre (WVHC; led by Dr Sally Lewis) are collaborating on a qualitative research study to undertake focus groups with patients in three clinical specialities.
As part of the PROVISION study, Cedar will invite patients who have received care in the NHS for heart failure, epilepsy and hip arthroplasty, to participate in focus groups to gather their perspectives on what PROMs mean to them and how PROMs could be used to improve their own care. Participants will be asked how they might like their data displayed for their own use and what method of viewing the PROM data they would find useful.
The results of the study should establish the most effective ways of presenting patient PROM data so it is easily understood and meaningful to patients. This is the first step to developing and implementing a patient-friendly model for the visualisation of PROM data (which will be carried out in subsequent studies).