Measuring patient-reported outcomes really matters
Writing in the NEJM earlier this year, Ethan Basch summarises the findings of his paper 'Patient-reported outcomes - harnessing patients' voices to improve care' as this:'Recording patient-reported outcomes electronically in real time and allowing clinicians to review longitudinal PRO reports can improve patients' quality of life, enhance patient–clinician communication, reduce emergency department utilization, and lengthen survival'.
So what is a patient-reported outcome?
We can think of it as a milestone or endpoint as a result of healthcare that comes entirely from the perspective of the person receiving that care. They are measured using validated questionnaires which may focus on pain, quality of life, wellbeing and ability to perform activities of daily living. PROMs are not new and have typically been used to assess the effectiveness and cost effectiveness of surgical procedures such as joint replacements and hernia repair. They may be generic as with the EQ5D quality of life tool or disease-specific as with the EORTC QLQ-C30 for lung cancer.
We have not truly begun to utilise these tools to their full potential in supporting our patients,particularly those with chronic disease. In this context the word 'outcome' may be something of a misnomer in that we are not really looking at endpoints here, but instead tracking current health status from the perspective of the patient. The specific purpose of doing this will vary from clinical scenario to clinical scenario but essentially it is a great tool to support meaningful shared decision making and allow people to lead their own care. Locally, people living with inflammatory bowel disease are keen to use PROMs to support virtual contact with their clinical team and reduce the burden of hospital attendance when they are well and stable - and there are many other examples of this approach emerging around the UK.
Dr. Basch and others' recent research confirms our anecdotal observations and conversations with patients here in South East Wales that using PROMs in a clinic setting can be very powerful way for people to prioritise what they wish to discuss in the consultation and broach topics which were previously difficult or taboo. Longitudinal tracking of PROMs can give a more accurate view of the impact of a therapy, for example on motor function in Parkinson's disease or pain. Later on, aggregation of real world outcome data can help patients and their clinicians better understand the trade offs between benefits and downsides of therapy in addressing their personal health goals. This data becomes an important adjunct to randomised control trial data tested on a population which may have had multiple exclusion criteria.
Moving beyond the consultation, PROMs data set alongside clinical outcomes, treatment and case mix variables can provide insight into clinical variation. Clinical teams who regularly review their outcomes are more likely to share knowledge, improve and innovate.
This complete dataset can therefore also inform where we need to invest in services to improve outcomes for patients and their experience of the healthcare we are providing.
Up until now, we have not had the informatics infrastructure to do this well, but this is a rapidly developing field with major progress over the last two years. Tech start ups like DrDoctor, MyClinicalOutcomes and Aparito are all tackling this and there are many more.
More important than the technology, however, is how this approach is built into the direct care of people using healthcare and their clinicians. Previously PROMs data, where collected, has gone into a black hole and response rates to questionnaires sent out remotely have been low. This information needs to be visible, accessible by patients and those looking after them so that its true utility is realised. The burden of measurement must be minimal. It is time to review the data we collect and begin to collect what matters to patients.
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