How effective is PPI in health research?

HEALTH research projects in the UK have increasingly sought the participation of patients and the public.  The hope is that their real-world experience – such as undergoing cancer treatment – will offer valuable new perspectives.

But doubts have been cast by a University of Huddersfield professor who has completed a trilogy of articles in which he and his collaborators have investigated the process known as patient and public involvement (PPI).  The research has led him to strike what he describes as a “positive but cautionary note”.

Paul Bissell is Professor of Public Health and Dean of the School of Human and Health Sciences.  His latest co-authored article is titled Exploring Difference or Just Watching the Experts at Work? in the journal Sociology.

Based on extensive analysis of PPI in a cancer research project in England, the article’s conclusion is that “PPI in this setting is less about exploring differences with regard to a plurality of expertise and more about simply watching or supporting the professional researchers at work”.

The authors do not suggest that PPI is without benefits for the system or the participants themselves.  “But we would also caution against an uncritical assertion that PPI in health research settings can unproblematically bring life-world expertise into the realm of the system”.

Patient and public involvement

Working with colleagues who include his former PhD student Dr Jill Thompson – of Sheffield University – Professor Bissell has now published three articles that probe PPI.

The first was 2012’s Credibility and the ‘professionalised’ lay expert, which appeared in the journal Health.  This was followed by 2014’s Exploring the impact of patient and public involvement in a cancer research setting, in Qualitative Health Research.

Now comes the Sociology article, co-authored by Professor Bissell and Dr Thompson with Professor Barry Gibson of Sheffield University.  A key theme is that the authors relate patient and public involvement to the social theories of the German thinker Jürgen Habermas.

Speaking about his work on PPI, Professor Bissell argues that patients’ often have very different agendas to those of professional researchers.

“What is often written about PPI is that it involves the experiences of patients in health research, but that's not really what’s going on at all.  What we see is that the research takes place and the patients are connected to it but they are not central to it.

“PPI is worth pursuing but we have to be careful about the benefits of it,” continued Professor Bissell.

“We have to be more nuanced about its benefits in relation to health research.  I am not saying it is a bad thing, but it is secondary to what clinical and professional researchers want to see, which is improved research, improved publications and patient outcomes.

“What emerges in our study is that patients were largely peripheral to that.  They were watching the experts doing the work and were not really engaged in the process.”