Requirements for the collection of electronic PROMS either “in clinic” or “at home” as part of the PROMs, PREMs and Effectiveness Programme (PPEP) in Wales: a feasibility study using a generic PROM tool

BACKGROUND: The patient-reported outcome measures (PROMs), patient-reported experience measure (PREMs) and Effectiveness Programme (PPEP) launched with the aim of supporting all National Health Service Wales (NHS Wales) organisations to collect PROMs and PREMs across a range of conditions. The aim is to collect generic and condition-specific PROMs and PREMs electronically from every secondary care patient in Wales to provide a measure that can be used to determine the clinical and cost-effectiveness of treatments and services. This study reports on the experience of the PPEP in developing an electronic platform suitable for large-scale data collection, storage, analysis and reporting and identifies the problems encountered and solutions implemented using a generic PROM survey as an example. METHODS: The generic PROM survey is available in English and Welsh and consists of a consent section and three components: the EQ-5D-5L tool, the Work Productivity and Activity Impairment (WPAI) tool and a number of “about you” questions. The “about you” questions are designed to assess factors which may affect patient health and outcomes such as information on height, weight, smoking history, exercise levels and alcohol consumption. A dedicated PROM database was built, and links between the e-PROM platform and other key clinical databases within NHS Wales were developed. RESULTS: Pilot testing of the unvalidated sections of the generic electronic PROM found that most of the questions were well understood and easy to answer: however, feedback suggested some improvements and changes were required, specifically around questions relating to alcohol and exercise. Electronic PROM collection has been initiated in six of the seven health boards in Wales and at-home collection initiated in three health boards. More than 9300 patients have completed a PROM survey. Early results from one Health Board show that patients took approximately 10 min to complete the questionnaire with most patients answering an average of 94.7% of the questions. CONCLUSIONS: Successful implementation of a PROM collection programme is dependent on a number of factors including close collaboration with clinicians, analysts, IT specialists and patients to ensure that any electronic system of PROM collection is fit for purpose and user friendly both for patients and clinicians.