The use and implementation of patient-reported outcome and experience measures (PROMS and PREMS) in integrated care: a mixed methods study

1.Background: Health status, symptoms, and quality of life data are typically collected through completion of self-report questionnaires called patient-reported outcomes measures (PROMs). PROMs have the potential to play a key role in delivering person-centred care by providing individualised assessments of health and social care requirements, facilitating delivery of care that reflects individual needs and preferences. At organisational levels, PROMs and patient-reported experience measures (PREMs) which collect experience of care data, are used to evaluate provider performance, shape policy, and drive quality improvement. This study investigated how PROMs/PREMs can help health and care organisations gain insight into individuals’ perspectives on their health and well-being, and ways to optimise their use in the delivery of safe, effective, and personalised integrated care (IC).

 

2.Approach Part One of this exploratory sequential mixed methods study involved qualitative interviews to capture individual perspectives and experiences on collection and use of digital PROMs data. Participants included professionals working in IC settings (n=33), along with patients (n=2) and carers (n=2) who had lived experience of IC. Qualitative data was analysed deductively using a codebook thematic analysis approach informed by implementation science (Theoretical Domains Framework) and behaviour change models (COM-B). Findings informed the design of Part two: an online quantitative survey. The survey was completed by 265 professionals in varying roles across heath, social and voluntary care organisations within England. Data were integrated at interpretation stage. The study was supported by patients and public advisors within the NIHR Applied Research Collaborative West Midlands Patient Involvement Committee (NIHR ARC WM PAC) (n=18). Alongside PAC advice on study design, patient partners contributed to abstracts, publications and to online survey content.

 

 

3.Results The survey indicated that 83% of professional respondents thought that it was feasible and practical to collect self-reported outcomes in IC settings but only 53% reported previous or current experience of PROMs use. Survey data highlighted multiple digital systems were used to collect a wide range of measures, with data indicating that these tools were not always validated instruments. Levels of paper administration remain high, with place of care delivery being the most common setting for completion. The survey results confirmed themes within the qualitative data, which indicated varied understanding of PROMs development, administration, and interpretation. Key challenges included heterogeneity of IC settings, fears about impact on workflow for professionals and survey burden for people using services. While healthcare-focused language of PROMs could be a barrier, areas identified for focused implementation efforts were virtual wards, hospital at home services and for primary care management of people with multiple long-term conditions.

 

4. Implications :Although UK based, findings are broadly applicable across different IC settings and systems. PROMs can capture outcomes that matter to individuals and communities. This study examines how PROMs, particularly those collected digitally, can support collaboration across disciplines and organisations, improve self-management, and empower patients and families. It also explores how PROMs can complement virtual care and telehealth. Finally, it considers potential harms, such as widening health or digital literacy inequalities, and suggests solutions.