A call for patient and public involvement in clinical research

Ahead of the RCP’s Twitter chat with WeDocs, Dr Sophie Petit-Zeman, director of patient involvement at the National Institute for Health Research (NIHR) Oxford Biomedical Research Centre, puts forward her case for how patient involvement can improve clinical research.

The 2009 NHS Constitution pledged to give patients access to information about research and the Health and Social Care Act 2012 requires NHS organisations to promote it. Therefore one might expect a happy and constructive union between well-informed patients and keen clinicians. Not so, as Simon Denegri, National Institute for Health Research (NIHR) national director for patients and the public in research, has reported

When the recent NIHR Clinical Research Network (CRN) annual performance report revealed all England’s 240 Trusts as research-active, I hoped it would also contain good news about patient and public involvement (PPI). The CRN essentially enables clinical trials to happen, on time and target. It’s part of the NIHR family within which I also work, in part supporting clinicians to involve patients/public in deciding what research to do, and how. And PPI is required for NIHR funding; as Professor Dame Sally Davies, chief medical officer and scientific adviser to the Department of Health has said, ‘People-focused research in the NHS simply cannot be delivered without the involvement of patients and the public.’

People-focused research in the NHS simply cannot be delivered without the involvement of patients and the public.

Professor Dame Sally Davies, chief medical officer and scientific adviser to the Department of Health

A call for person-centred research

Dame Sally sets the bar high, and the call for person-centred research is repeated across NIHR literature. Indeed, it’s so central to it, that I thought PPI might be among the annual performance report’s High Level Objectives. But no. Instead, these focus on numbers of trial participants, especially for dementia, ability to recruit fast and progress on time and target, numbers and efficiency of commercial trials, and spread of trials across primary care. 

I’d like to think PPI wasn’t mentioned there because it runs through NIHR like writing through a stick of rock, underpinning the report’s successes. In some cases I’m sure that’s true: evidence for impact of PPI is good, and growing (in part through the work of our PPI Impact Assessment Fellow) with regard to trials recruiting and retaining participants. But I’m sure many clinicians reading the report, or struggling with studies, won’t realise that their flagging trial could work better if it was designed with and guided by - rather than for - patients.

Working in partnership to set the research agenda

I regularly have frustrating conversations with researchers reluctant or too busy to do PPI. Many decide it’s the annoying box on a funding form which Sophie can deal with rather than something that may make their research better, and indeed easier.  

In Oxford, we support James Lind Alliance (JLA) partnerships enabling patients, carers and health/social care professionals to set the research agenda, in turn grounding research in what matters to those at the sharp end and making studies acceptable to participants. It’s also a process with far-reaching impacts on clinical care. 

Noémi Roy, a clinical research fellow at our trust, leads a JLA rare anaemias partnership. She says: 

This has changed how I practice medicine. It has changed my understanding of what it means to listen to patients. It has changed the language I use when I speak with them. Most importantly, it has changed my vision of how to deliver the care we give them. It has made it our vision.

Supporting patient and public involvement in research

As well as JLA partnerships, we support PPI throughout the research cycle, from designing studies to writing lay summaries, information sheets and dissemination. Via our website, we unite PPI volunteers and researchers who realise their work may be enhanced, not hindered, by PPI. 

I’m repeatedly struck by how fast PPI spreads when researchers find out how it changed their colleagues’ approaches for the better. But a note of caution: those working in PPI often use words like ‘better’ or talk about 'best practice’. And we know a little about this, but not much.

As PPI matures

Research into PPI is growing, and while this makes some sense, I fear we may seek evidence for things that don’t lend themselves to measurement. Surely PPI should be as integral to research as, say, statistics? And I’ve yet to hear cries for evidence that statistical analysis makes research better.

As the PPI machine grows, we do need better evidence for its impact, and – crucially, but it remains challenging – to systematically record what we do. But just as we leap to quote Dame Sally that ‘No matter how complicated the research or how brilliant the researcher, patients and the public always offer unique, invaluable insights’ without demanding ‘show us your evidence,’ surely some things just ‘are?’ Among these, that research is enriched by involving those it professes to help.

Twitter chat

Join our twitter chat on Wednesday 7 September, in partnership with WeDocs, an online community of healthcare professionals, talking about the role of patient involvement in clinical research.

Follow @RCPLondon on Twitter and contribute to the debate using the hashtag #FutureHospital.