Led by Mike Beddard (Senior Researcher), Cedar has produced a narrative review on the topic of Patient level PROMs visualisation. This important and informative report is another output from the ongoing collaboration between Cedar (Cardiff & Vale UHB) and the Welsh Value in Health Centre.
The full report can be accessed HERE. A summary is provided below.
Patient reported outcome measures (PROMs) are a form of patient-generated health data which measure health from the patient’s perspective. PROMs have largely been used at the organisation (meso) and system (macro) level to evaluate treatments and care providers. Extending PROMs to include the patient (micro) level can aid shared decision-making between patients and care-givers and enhance patient care.
This is a narrative review which focuses on visualisation formats for PROMs. The purpose was to explore the current landscape (with a focus on Wales and the UK) on graphic visualisation formats for PROMs scores for interpretation by patients and clinicians, to help in the design of a research protocol for the PROVISION qualitative study being conducted in Wales.
The available published and unpublished evidence shows that the use of PROMs to guide patient care is not currently routinely embedded within clinical practice in the UK, although examples of good practice exist. Strategies to communicate patient’s own PROM data (at the patient-level) have not been widely tested or established.
Current research on PROMs visualisation is limited. Broadly, studies have found that incorporating PROMs into direct clinical practice with patients has many benefits such as promoting patient activation, enhancing patient-clinician relationship, and improved quality of care. Across many clinical specialties there are examples of raw or summarised PROMs data being given as feedback to patients and/or clinicians by using different graphic visualisation formats, but it is not known how interpretable and meaningful these PROMs are by both patients and clinicians. As a result, there is a growing interest from scientists and clinicians to develop patient-facing dashboards to provide a quick, easy and useful method of summarising a patients PROM data.
Studies on PROM data visualisation reveal that bar graphs and line graphs are the preferred approach but with clear axis/bar chart labelling to indicate if the value is of concern. Elements such as score directionality, axis labelling and clinical interpretation for distinguishing symptom severity are important considerations. Evidence suggests that there is not a ‘one size fits all’ format for visualising PROM data as it is dependent on many factors such as the demographic of patients, clinical condition, and quality of data collected. There remain several challenges with visualising PROMs including interpretation accuracy and both patient and clinician opposition to the use of PROMs.
In Wales, PROMs collection has been adopted by all health boards for specific conditions such as cardiac and orthopaedic conditions. PROMs that align to the 38 nationally agreed PROMs sets are collated to enable visualisation for a range of conditions at both patient level within the electronic patient record and at cohort level within dashboards (such as orthopaedics and Lymphoedema). Work is undergoing to enable PROM visualisation in direct care for patients across a range of clinical specialties. The PROVISION study is likely to help build on this through exploration of patient views on access to and visualisation of patient-level PROMs in three example conditions: heart failure, epilepsy and hip arthroplasty. Results from the study will establish effective ways of presenting PROM data to patients. It is hoped that the results will inform the development and testing of a prototype of PROM visualisation across many more specialties in the near future to improve patient-centred care in Wales and beyond, and to better understand how to support patients to use PROMs as a self-management aid, as well as an effective tool to improve communication between care givers and receivers.