Understanding and Valuing Patient and Public Perspectives

Patient and Public involvement (PPI)

Warwick’s research into patient and public involvement (PPI) has contributed to changing the way in which healthcare is researched, evaluated and improved. It has embedded the patient perspective into the development of health and social care systems, both in the UK and internationally. Research by Professor Sophie Staniszewska and colleagues from Warwick Medical School has directly shaped more than 75 NICE guidance documents, including the first national and international clinical guidelines on patient experience.

The challenge

Less than a decade ago, patient experience was not necessarily viewed as a key concept in the health-practice evidence base and there was no agreed evidence-based patient experience framework to inform the development of national policy and practice. With respect to PPI, the international evidence base for this could be fragmented and poorly understood.

Our approach

Between 2007 and 2020 researchers at the University of Warwick played a key role in the development of two interconnected streams of highly significant work that have transformed understanding of and influenced national and international strategy over patient experience and involvement:

• Patient experience: The Warwick Patient Experience Framework (WaPEF), developed in 2012 by Professors Staniszewska and Seers, is recognised as the underpinning framework for corresponding NICE guidance and has also been drawn on for the development of other relevant NICE guidance.

• Key patient-reported outcomes (PROMS) developed in 2013 by Dr Haywood and colleagues, highlighted the need to embed patient experience in health-related quality of life research

• Patient and Public Involvement (PPI): Staniszewska’s research has underpinned the development of the international PPI evidence base, which was previously poorly theorised, with limited understanding of PPI impact. To generate an evidence base for policy and practice studies, research looked at how PPI works, what to report about PPI, how to enhance PPI, and how to support global PPI practice

Our impact

Research by Professor Sophie Staniszewska and colleagues from Warwick Medical School has directly shaped patient experience NICE guidelines – evidence-based guidelines for health and care in England – which has subsequently shaped more than 75 further NICE guidance documents. The patient experience NICE guidelines were the first national and international clinical guidelines of their kind, and subsequently have been extensively cited in other NICE guidance as well as taken up by NHS Trusts. Common benefits of adopting the guidance being cost-savings, reductions in re-referrals and patients being both empowered and effectively informed regarding their own healthcare. Their work has contributed to national strategy for patient experience, with the NHS England National Director for Patient Experience further endorsing the “high-quality evidence base” provided by Warwick as underpinning the national approach. To advance PPI best practice, in 2018 Prof Staniszewska in collaboration with NIHR, Cochrane and COMET formed the International PPI Network with over 240 member organisations and individuals, with membership representing patients, the public, researchers, clinicians and policymakers. In addition, Professor Staniszewska founded a new journal in 2015 - Research Involvement and Engagement (RIE) – to further develop the evidence base for PPI, with patient advocate Richard Stephens as its co-editor. The readership of the journal has increased by over 500% by 2020 to more than 170,000 individuals, firmly establishing its international reputation for PPI research. It uses a unique co-production model with patients involved at all stages.