First steps in PROMs and PREMs collection in Wales as part of the prudent and value-based healthcare agenda

Abstract

Purpose: Patients are experts in their own health and should be treated as equal partners in their care. Patient-reported outcome measures (PROMs) are an effective way of gathering patient feedback and can facilitate effectiveness and cost-effectiveness analysis to improve decision making and service improvement. The PROMs, PREMs & Effectiveness Programme was initiated in 2016 and aimed to develop an electronic platform to facilitate collection of PROMs and Patient-reported experience measures (PREMs) from secondary care patients across Wales.

Methods: We worked with all Health Boards in Wales, the NHS Wales Informatics Service (NWIS), and Cedar (a healthcare technology research centre) to identify and meet technical requirements to develop a platform which is fit for purpose. Patient groups were included throughout the development to gather feedback and for extensive testing. Clinical teams helped identify the most appropriate tools, with licences, translations and electronic formatting issues being managed centrally.

Results: The developed platform is integrated with patient administration systems minimising the need for manual input, with processes in place to allow automatic collection triggers according to nationally agreed schedules. We have over 30 nationally agreed PROMs 'pathways' with over 110,000 PROMs collected to date. Responses are fed back to clinicians via the electronic patient record and to each health board via feeds to the national data warehouse, making data easily accessible to different teams, maximising use and application.

Discussion: The national platform has provided a co-ordinated approach to PROMs collection in Wales, offering an effective means of communicating with patients outside the traditional clinic visit.

Keywords: Health-related quality-of-life; PROMS; Patient engagement; Patient-reported outcomes; Shared decision making; Value-based healthcare.

Fig. 1

A screenshot of one of the “About You” questions on the national platform, to illustrate the patients view

Fig. 2

Shows a single patient referred onto a generic PROMs pathway in early 2018 and then referred onto a cataract pathway in early 2019. This patient would complete a generic PROM and a condition-specific PROM (in this case, CatPROM5) at the time points indicated

Fig. 3

Shows a screenshot of one of the data dashboards available to view