Involving patients and the public in healthcare operational research

We are delighted to see The BMJ leading the promotion of meaningful public and patient involvement (PPI) in research,1 and we support Vayena’s contention that PPI in initiating health research is an underplayed aspect of this “patient revolution.”2 It may seem unrealistic to embed PPI in health research within a major organisation, but since the inception of the National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care for the South West Peninsula (http://clahrc-peninsula.nihr.ac.uk) we have developed a model for achieving this.

Collaboration between researchers, clinicians, our “in house” public involvement group (PenPIG), and other lay groups, including people with dementia, has enabled members of the public to become involved in health research. It has allowed them to generate research questions, be co-applicants on grants, develop research methods, be members of trial management groups, develop data analyses, and contribute to research dissemination. We have developed PPI in areas that typically exclude the public and embedded PPI at an organisational level.3

The National Institute for Health Research is currently reviewing PPI in its research (www.invo.org.uk). PenPIG identified two priorities that align with The BMJ initiative:

Building public awareness of health research and opportunities for PPI through education curriculums

Increasing PPI in the setting and governance of research agendas at national and regional levels.

The public can and should be involved in health research as producers and users of knowledge; in doing so, they should reduce research wastage.4 Our model also demonstrates the fundamental importance of sustained funding and organisational commitment if the benefits of PPI are to be fully realised.