Sally Lewis

Background: The Organisation for the Economic Co-operation and Development (OECD) undertook the Patient-Reported Indicator Survey (PaRIS) to understand if current healthcare delivery and policy were meeting people’s needs. Although the UK as a whole is an OECD member, Wales participated in the PaRIS study independently of the rest of the UK since healthcare is a devolved matter to the Welsh Government and Wales is internationally acknowledged for its work implementing Patient Reported Outcome Measures. Methods: Here, we describe and reflect on how PaRIS was implemented, discussing both the initial field trial and the final survey, which targeted GP practices and patients over the age of 45. We detail the governance structure used for the project, the various parties that cooperated to implement the project, and the stakeholder engagement approach utilized. We also provide descriptive statistics of the sampled GP practices and patients. Results: Out of 199 surveyed GP practices, 75 responded to the survey. Out of 109 600 sampled patients, 25 839 responded to the survey, out of which 7 706 patients were from the 75 recruited practices and met the PaRIS inclusion criteria. Participants were representative of the population of Wales with respect to urbanization levels, sex, as well as ethnicity. GP practices were provided with infographics, giving them insight into their patients’ health compared to patients’ health across Wales. While the OECD flagship PaRIS report has now been published, further work is being undertaken in Wales to utilize the available data. Conclusion: Wales achieved one of the most comprehensive datasets of all PaRIS nations, despite its small size. The data offered the participating GP practices an opportunity to understand how they and their patients compared to other practices across Wales. The data are now being employed to understand population health and drive policy change and healthcare improvement initiatives across the nation.

Background: Patient-reported outcome measures (PROMs) are standardised questionnaires completed by patients to measure health-related quality of life. It is unclear how these data are accessed by patients or clinicians and how it should be presented to optimize its use. Objective: The aim of this study is to explore patient perspectives on PROM data access and visualisation. Design: A qualitative focus group study design was used. A topic guide was utilised throughout the focus groups with participants sent exemplar graphs to review beforehand to facilitate discussion around PROM visualisation. Setting: Participants were recruited from a tertiary care hospital and via social media between January 2023 and May 2024. All focus groups took place via Microsoft Teams and lasted ∼1 h. Participants: Thirteen participants from three clinical specialties (epilepsy, heart failure, and hip arthroplasty) and an additional group with any long-term condition requiring consultant led care were recruited and took part across four focus groups. Main Outcome Measure(s): Patient perspectives relating to PROM data access and method of data visualisation. Results: Access to PROM data was seen as beneficial. Accessibility in terms of technology use and readability of results was seen as a priority by participants. Therefore, the simpler visualisations used (e.g. bar charts) were seen as the preferred option compared to more complicated spider diagrams. Most felt that it would be preferable for their data to be discussed with a member of their care team, which would be important for those who could not access their data for technology and language reasons. Conclusions: Access and discussion of PROM data was seen as beneficial and could potentially aid in making positive changes to health behaviour. However, it needs to be accessible to all in terms of physical access (i.e. via email or an app) but also readability of results.

Introduction: The use of electronic patient reported outcome measures (ePROMs) is increasing in routine cancer care, with benefit demonstrated in improving patient survival, satisfaction and response time. ePROMs represent a complex intervention, with successful implementation reliant upon a range of questionnaires, platform, patient and clinician characteristics alongside the wider organisational readiness and environment. Key performance indicators (KPIs) assess the performance of a system. A KPI framework would offer value in assessing ePROM implementation projects, however the outcomes and indicators of importance are not clear. Method: A modified Delphi methodology was used to define a framework of KPIs for assessing the deployment of ePROMs in routine cancer care. Potential KPIs were identified through literature searches, de-duplicated and allocated to a matrix of domains. Delphi participants were identified through a literature review and study team networks. KPIs were presented to participants for prioritisation using an online platform. A final set of KPIs was identified through two rounds of consensus with participants rating each KPI for relevance. Results: The literature search generated a list of 196 potential KPIs of which 48 were considered by 15 experts in the Delphi process. Consensus was reached to include 12 KPIs in the first round and a further 2 KPIs in the second round. Participant’s open text responses were analysed, suggesting a number of areas of debate regarding which KPIs are most pertinent. Discussion: This work provides a framework of 14 KPIs, covering those of relevance to patients, clinicians and health services and recognising the acceptability, feasibility and impact of ePROMs. This framework offers a means to appraise the implementation of ePROMs, supporting teams as they implement ePROMs in routine cancer care and other healthcare settings.

AHR explores major national and international health issues and questions. Our readership includes managers, policy makers and clinical staff in health organisations including government departments, hospitals, community centres and aged-care facilities as well as all others with an interest in the health industry. It enables health professionals to keep their fingers on the pulse of the nation´s health decisions and to know what the most influencial commentators and decision makers are thinking. It also publishes new research from practitioners - managers and clinicians - and reports of breakthrough projects that demonstrate better ways of delivering care.

It is undeniable that the NHS, our universal healthcare system, is struggling to meet the needs and expectations of a population that is very different from its inception in 1948. Costs are rising inexorably and, yet, patient experience of their healthcare is often not what we would want it to be. Inequities still exist, both in terms of access to care and clinical outcome. As we spend more and more, surprisingly little is known about the extent to which we are meeting the healthcare goals and outcomes that really matter to patients. Equally, clinical teams are stretched and facing burnout as we emerge slowly from the pandemic.

This article addresses the issue of maintaining essential healthcare services throughout the pandemic and beyond. It suggests a key role for the use of patient-reported outcomes.

AHR explores major national and international health issues and questions. Our readership includes managers, policy makers and clinical staff in health organisations including government departments, hospitals, community centres and aged-care facilities as well as all others with an interest in the health industry. It enables health professionals to keep their fingers on the pulse of the nation´s health decisions and to know what the most influencial commentators and decision makers are thinking. It also publishes new research from practitioners - managers and clinicians - and reports of breakthrough projects that demonstrate better ways of delivering care.