Patient and public involvement in research: future challenges
- 1Patient and Public involvement and Patient Experiences, Royal College of Nursing Research Institute, Warwick Medical School, Division of Health Sciences, University of Warwick, Coventry, UK
- 2INVOLVE, Wessex House, Upper Market Street, Eastleigh, Hampshire, UK
- 3National Institute for Health Research, Clinical Research Network, 43 Whitfield Street, London, UK
- Correspondence to
: Dr Sophie Staniszewska
Royal College of Nursing Research Institute, Warwick Medical School, University of Warwick, CV4 7AL, UK;
Patient and public involvement (PPI) in health and social care research aims to enhance the quality, appropriateness, acceptability and relevance of research, ensuring it addresses issues of importance to patients and the public.1 ,2 Policy commitment from National Institute of Health Research (NIHR) and a supportive infrastructure including INVOLVE (http://www.invo.org.uk/) and the help offered by Research Design Services have enabled PPI to flourish in the UK. While great progress has been made, there is much to do before PPI becomes business as usual. This editorial considers some of these challenges, in relation to the evidence base, the capacity and capability of researchers, patients and the wider community and the status of PPI.
While PPI activity has increased, the evidence base underpinning this activity remains relatively weak, primarily because of poor reporting with many studies including only partial information. Poor reporting has important implications, as it clouds our understanding of what works, for whom, in what context and why. This makes it much harder for practitioners wishing to draw on such evidence to identify and implement the most effective forms of PPI in particular settings. We have started to address the issue of poor reporting through the development of the Guidance for Reporting Involvement of Patients and Public (GRIPP) checklist, using recent systematic reviews to identify the key items PPI studies should report.2–4 GRIPP is now being developed further using the EQUATOR method to generate international consensus (http://www.equator-network.org). The EQUATOR Network promotes the development and dissemination of guidelines for the transparent reporting of health research. The intention is not to limit the content of papers and reports, but to ensure key information is reported, enabling the quality and strength of the PPI evidence base to grow.
Researchers have embedded the philosophy and practice of PPI across different health and social care sectors inconsistently. There are a range of reasons for this including differences in knowledge, aptitude as well as different approaches to collaborative working. PPI is a discrete and significant body of work that researchers need to be aware of and understand, in the same way as other areas of knowledge. At present, training and support to implement the philosophy and practice of PPI is provided by INVOLVE at a generic level and by Research Support Services at an individual and project level in the UK. However, there is still a need for more substantive support and training for researchers. In addition, some researchers need help to develop capacities and capabilities important to successful PPIs such as collaboration skills, listening skills, insight, empathy and an understanding of how different values and motivations can influence patient and public involvement in research.
As researchers develop their skills and knowledge, attention turns to ensuring that we have patients and members of the public who can meet this demand, with appropriate capacities and capabilities to allow them to fully engage in the research process in the way they wish or to lead research. Have we contributed enough to grow our community or facilitate the communities growing their own capacity and capability? We would argue that more effort needs to focus on community capacity, and INVOLVE is now leading an NIHR working group to find a way forward. Some organisations, such as charities and universities, have made important steps in developing community capacity, setting up networks which offer training, but greater efforts and leadership will be needed in the future across the sector as a whole. Without such support and skilling up, patients who become involved may have a poor experience, feel disempowered and disengaged and opt out of future involvement, diminishing our community capacity.
The final area of challenge is concerned with the status of PPI. In the UK healthcare organisations, charities and key funders have integrated PPI into much of their work. Such legitimisation has been vital, helping researchers recognise the importance of PPI. Another important step in the legitimisation of PPI has been made by the Higher Education Funding Council which has asked researchers to supply evidence of the societal benefit of their work in the next assessment of research quality in 2014.5 These examples illustrate the progress that has been made, but further efforts are needed. It may be that real progress will only be marked when poor PPI is seen as a fatal flaw in a research study, something which fundamentally undermines research quality, as opposed to an optional extra.
In summary, PPI in research has flourished in the last decade. We need to address the challenges discussed here to ensure that PPI becomes fully embedded in research culture and practice so that the research we produce is acceptable, appropriate and relevant for those it intended to benefit, patients and the public.