Patient involvement in PROMS—individual opportunity and strategic challenge

Patricia Holch, Roger Wilson, and Jennifer Bostock discuss the importance of patient reported outcome measures for achieving truly patient centred medicine

Patient Reported Outcome Measures/Patient Reported Outcomes (PROMs/PROs) are questionnaires which aim to quantify health status (including quality of life) and to measure what matters to patients. At the UK National PROMS research conference, patients, clinicians, researchers and academics came to Leeds Beckett University to discuss latest PROM developments and hot topics in the UK, Europe, and beyond. The conference has always involved patients and this year was no exception with patients playing substantial roles in the planning and successful delivery of the conference as demonstrated in the patients included™ status.  

It has been a slow evolution, but patients are now seen as essential and valued collaborators in PROM development, dissemination, and impact. PROM collection operates at both an aggregate and individual level, the former used more as a quality assurance process (as with the National PROMS initiative) while the latter supports patient care, giving credence to individual patients’ experience, and providing information.  

A recent NIHR commissioned review described the discord between these two approaches, asking whether the same PROMS should be used for both purposes? The theme of the 2019 UK PROMS conference was “‘integration and innovation.” Presentations, workshops from leading clinicians and discussion panels were focused on how clinical teams might integrate PROMS into clinical practice to enable better patient care. Patients working with clinical teams through all aspects of the PROM/PRO integration process were seen as essential to success. A further factor was linking PROMS electronically to electronic patient record (EPR) systems so that the PROM data are quickly made available to clinicians. This type of shared expertise and collaboration has the potential to transform the use of PROMS in clinical practice, making it more likely to occur and to be useful to both patients and treating clinicians. The challenge is to aggregate PROM data collected at a macro level to be used strategically to develop patient-centred service provision and thus provide better patient care.

One idea to address this challenge was put forward by Roger Wilson, a patient and one of the plenary speakers. He proposed a definition of “value” through an acronym, Variations in Actual Life and Usual Experience, providing a constant reminder that the patient experience should be seen in a holistic way. This implied longitudinal understanding of patient experience mapped against the patient pathway for any and every condition, enabling the use of data in both a strategic manner and to inform patients and clinicians. The only way of gathering this volume of data is through electronic means, such as smartphones. Failing to involve patients in developing this would be unethical, he suggested.

We need to develop PROM systems capable of delivering this. A suggestion made by Mel Calvert from CPROR in Birmingham, was a large scale collaborative approach with multiple stake holders including clinicians, commissioners, and researchers, but with patients/carers leading the process. We also heard from the impressive National PROM Programme in Wales where over 25,000 PROMs have been collected in secondary care and these data are available in the EPR. Although still in development the Wales National Platform offers a promising vision of how value-based healthcare might be developed. This is an important step along the road, but there is much more that can be done. 

Patients need to have outcomes that matter to them and to apply that pathway information to their personal experience of treatment and care. Measurement at one point in time cannot achieve this. It is important that patients are at the centre of these conversations about PROs and their use at both individual and strategic levels. They must be an integral part of the work to address the challenges. This conference brought all stakeholders together at a national level to showcase and facilitate this via real change and lasting progress.

  • For reasons of brevity our use of the word patient includes all those who bring lived experience. 

Patricia Holch is a senior lecturer in psychology at Leeds Beckett University, an honorary fellow of the Patient Centered Outcomes Research Group at University of Leeds and chair elect of the International Society of Quality of Life UK & Ireland Special Interest Group.

Twitter: @TrishHolch

Competing interests: None declared.

Roger Wilson was diagnosed with soft tissue Sarcoma in 1999 and founded Sarcoma UK. He is an active patient representative and advocate with NCRI, NICE, MRC, Cancer Research UK, EORTC, ESMO and EMA.

Twitter: @amocras

Competing interests: None declared. 

Jennifer Bostock is a patient and public advisor: co-lead of Quality, Safety & Outcomes of Health & Social Care PRU (Kent & Oxford University). She is also a co-lead of Policy Innovation Research Unit (LSHTM) and ethics lead and public Advisory Group Chair at Research Design Service London. 

Competing interests: None declared.