Measure what we want: a taxonomy of short generic person-reported outcome and experience measures (PROMs and PREMs).

Abstract

Health and care systems are complex and multifaceted, but most person-reported outcome and experience measures (PROMs and PREMs) address just one aspect. Multiple aspects need measuring to understand how what we do impacts patients, staff and services, and how these are affected by external factors. This needs survey tools that measure what people want, are valid, sensitive, quick and easy to use, and suitable for people with multiple conditions. We have developed a coherent family of short generic PROMs and PREMs that can be used in combination in a pick-and-mix way. Each measure has evolved iteratively over several years, based on literature review, user inputs and field testing. Each has has a common format with four items with four response options and is designed for digital data collection with standardised analytics and data visualisation tools. We focused on brevity and low reading age. The results are presented in tabular format and as a taxonomy. The taxonomy is categorised by respondent type (patient or staff) and measure type. PROMs have subdomains: quality of life, individual care and community; PREMs have subdomains: service provided, provider culture and innovation. We show 22 patient-reported measures and 17 staff-reported measures. Previously published measures have been validated. Others are described for the first time. This family of measures is broad in scope but is not claimed to be comprehensive. Measures share a common look and feel, which enables common methods of data collection, reporting and data visualisation. They are used in service evaluation, quality improvement and as key performance indicators. The taxonomy helps to organise the whole, explain what each measure does and identify gaps and overlaps.