PROVISION: PROm VISualisatION

  • Research type

    Research Study

  • Full title

    A qualitative study using focus groups to explore patient views on access to and visualisation of patient-level patient reported outcome measures (PROMs) in three exemplar clinical areas

  • IRAS ID

    319643

  • Contact name

    Laura Knight

  • Contact email

    Laura.Knight2@wales.nhs.uk

  • Sponsor organisation

    Cardiff and Vale University Health Board

  • Duration of Study in the UK

    1 years, 0 months, 1 days

  • Research summary

    Research Summary:
    Patient-Reported Outcome Measures (PROMs) are questionnaires that are completed by patients to gather their thoughts of their condition, wellbeing, 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, government and in research. However, patients often complete PROM questionnaires but are not able to see or review the data once submitted, and so the use of individual PROM data by patients themselves is limited.

    This study will use patient focus groups to gather their perspectives on what PROMs mean to them and how PROMs could be used to improve their own care. Patients will also be asked how they might like their data to be displayed for their own use and what method of viewing the PROM data they would prefer. This is a pilot study which will invite patients who have received care in the NHS for heart failure, epilepsy and hip arthroplasty. 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.

    Summary of Results:
    Patient access to patient reported outcome measures (PROM) data was seen as generally beneficial and could potentially aid in making positive changes to health behaviour and shared decision making with people within their care team. However, it was made clear that it would need to be accessible to all both in terms of technology use and readability of results. Therefore, the simpler the visualisations used (e.g. bar charts) were unanimously seen as the preferred option compared to something more complicated such as a spider diagram. Most also felt it would be preferable for their data to be fed back and discussed with a member of their care team. This would be particularly important for those who could not access their data for digital or other reasons such as language barriers.

  • REC name

    West Midlands - South Birmingham Research Ethics Committee

  • REC reference

    22/WM/0280

  • Date of REC Opinion

    17 Jan 2023

  • REC opinion

    Further Information Favourable Opinion