Title: Protocol for a Realist and Social Return on Investment evaluation of the use of Patient Reported Outcomes in Value Based Healthcare Programmes
Funder: Health and Care Research Wales (Welsh Government)

Abstract: Background There is growing recognition that in order to remain sustainable the NHS must focus on delivering the best outcomes within the available resources. This is the basis of a value based approach to healthcare. In line with this, Welsh Government’s 2019 Value in Health action plan is centred on outcomes measurement and highlights the need to focus on outcomes that are meaningful to patients. This has led to a growing interest in the role of recording patient reported outcomes (PROMs). In contrast to clinician recorded outcomes, PROMs measure patients’ perspectives on the impact of disease on their lives. In 2015 Aneurin Bevan University Health Board (ABUHB) set up a team to focus on recording PROMs as part of a value based healthcare programme. Working with a software supplier, the team developed a secure electronic PROMs platform that enables patients to complete PROM questionnaires online. Completed PROMs are visible to clinicians in “real-time” via a secure login. Over the past five years, the programme has grown significantly and to date over 61,500 electronic PROMs have been requested across 25 different disease areas. The overall aim of the PROMs collection work is to improve patient care and outcomes via: 1) Direct Care: Clinicians have direct access to the PROMs and this data can be used within the consultation to focus on symptoms that matter to patients. 2) Clinic re-design: PROMs can be used to support remote triaging of patients as well as remote follow up and virtual clinics. 3) Service assessment: Aggregate PROMs data can be used to gain valuable insights such as which aspects of a service work well and identifying unmet needs. As an early adopter, ABUHB are now starting to see the potential benefits of PROMs collection; however, the programme has not yet been comprehensively evaluated. As such it is essential to undertake a robust evaluation, especially given the fact the health board is serving as a pilot site for the national value in health programme who aim to replicate this PROMs work across Wales. Aims • What works about PROMs collection, for whom, in what contexts, and why in a Value Based Healthcare context? • What is the social return on investment of integrating PROMs collection in routine care in a Value Based Healthcare context? Setting Three tracer services in ABUHB: Parkinson’s Disease, Epilepsy and Cataracts. Methods This is a mixed methods study including WS1: rapid review of literature and PROMs programme in ABUHB to develop logic models, WS2 realist evaluation to test and refine logic models, and WS3 social return on investment (SROI) analysis to measure and assign a financial value to the outcomes that stakeholders experience as a result of PROMs being used in decision-making. Benefits to the public, patients and the NHS We will identify barriers and opportunities to realise Value Based Healthcare at scale and produce roadmaps for All Wales implementation in the short, medium and potentially long term. We envisage this will start with PROMS; outcomes from the study include unlocking their capacity and potential to help improve patient outcomes and shared learning about professionals views, attitudes and expectations. The study will lead to an upskilled, adaptive and responsive ABUHB workforce with greater understanding of the impact and value of incorporating PROMs data in their decision-making; a workforce equipped to handle the ever-evolving role of healthcare professionals.

Lay abstract: Value Based Health Care (VBHC) is a list of ideas and actions seeking to provide every individual with the best care possible. People complete questionnaires called Patient Reported Outcome Measures (PROMs). Different health conditions require different questions. Developing the ways we measure and use PROMs may improve peoples’ lives. Realist evaluation and Social Return on Investment (SROI) Value is more than just cost. Value represents a relationship between what we use (knowledge, people, funds, activities) and what happens in different contexts to achieve the desired outcomes from the perspective of patients and clinicians. Realist methods will be used to explore these relationships. SROI seeks to identify changes that are often unrecognised and unmeasured. SROI measures changes that are important to the organisation and the individual. Using this framework, SROI measures social and environmental costs as well as economic costs. Objectives We need to: - discover whether the PROMs we are using measure what matters to individuals and also whether we can reliably measure change with these tools. - identify whether collecting PROMs leads to improvement in patient care. This might include i) more timely care, ii) care closer to home iii) direct referral to relevant health professionals, iv) avoiding unnecessary hospital visits vi) prevent unplanned admission. - measure the overall value of collecting PROMs; is it of sufficient value that routinely collecting PROMs is worth the time and resource? - understand why some people do not complete PROMs. We need to ensure that everyone who might benefit has access. People must not be excluded because of poverty, deprivation, age or any other characteristic. What we will do We will review the PROMs programme in ABUHB to better understand how things are supposed to work in an ideal world. We will focus specifically on three service areas, namely, epilepsy, Parkinson’s disease (PD) and cataracts. We will analyse documents and processes, undertake a questionnaire survey, and interview patients/carers and professionals to see how this translates into practice. We will undertake an SROI of using PROMs. What We Hope to Discover in Epilepsy, PD and Cataracts In epilepsy, we know that depression is linked to seizures. We seek to discover if using PROMs leads to earlier diagnosis and treatment of previously undiagnosed mood disorder In PD, PROMs capture abnormalities in movement, swallowing and mood. Scores may help determine whether the patient needs changes in medication or referral to therapies. Use of PROMs may enable people to get care that is tailored to their needs, instead of the default position of seeing people at a fixed time interval. We know that people who receive cataract surgery do not all achieve the same improvement. Cataract PROMs help to determine how well a person functions in the world before surgery. This can prevent the harm of unnecessary surgery and reduce the demand for surgery. Public Involvement The research is co-produced with patient groups from inception to dissemination. Dissemination ABUHB is serving as a pilot site for the national VBHC programme who are seeking to replicate this work across Wales. We will report our findings to funding bodies, the Welsh Government, particularly the Wales VBHC, National conferences in epilepsy, PD and Ophthalmology, Citizen Panels, Partnership Boards and publish in academic journals.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;8.1 ORGANISATION AND DELIVERY OF SERVICES;8.2 HEALTH AND WELFARE ECONOMICS
Health categories: NEUROLOGICAL;EYE