Foreword by Professor Gavin Screaton, Head of Medical Sciences Division
Meaningful patient and public involvement (PPI), done appropriately, ensures that research addresses the issues and problems that are really important to the people it is targeted at. Anyone who sees patients, or visits a health professional, knows how important it can be for the clinician to really listen to what the patient is telling them, and this is no different in health, medical and social care research. Listening to what patients and the public have to say helps make research more ethical and better quality. It can help to get research into practice quicker, promote promising outcomes more widely and make us better researchers and clinicians by gaining a more in depth understanding of living day-to-day with long-term medical conditions.
Funders are increasingly recognising this and demanding inclusive PPI in applications. It isn’t easy to do well but the benefits are many, and there is a lot of support and willing contributors available to help.
I encourage you to take a look at and make use of the new PPI Guidance for Researchers which has been compiled by PPI staff from across the Medical Sciences Division and local NIHR organisations, with input from researchers, patients and members of the public.
I leave you with a quote from a researcher on the difference PPI made to their research. I think it nicely sums up the value of working with patients, the public and other partners:
“It wasn’t a case of ‘us’ versus ‘them’. We all worked together: clinicians, academics, our industry partners and PPI. That was the real success of the study.”
Last updated April 2023.
Section 1 – Introduction
Patient and public involvement (PPI) in health and social care is research being carried out ‘with’ or ‘by’ members of the public, rather than ‘to’, ‘about’ or ‘for’ them.
This includes, for example, working with research funders to prioritise research, offering advice or expertise as members of a project steering group, commenting on and developing research materials, undertaking interviews with research participants.
There is increasing evidence that health research conducted with PPI improves research and achieves better outcomes for patients.
Patient and public involvement (PPI) is probably a familiar term, but it may still cause confusion or concern. Researchers who helped develop this PPI guidance requested a section called Don’t panic! This guidance is very comprehensive and may feel like a huge ‘to do’ list, but please be reassured that you don’t need to include everything in it in your research project.
The guidance has been created for health and medical researchers from Oxford, in general, with a National Institute for Health and Care Research (NIHR) perspective. However, it is available to all researchers and the information is relevant for all funding bodies.
There are five sections. We recommend you read Section 2 which will give you an overview and then dip into the parts that are relevant. Each section contains links to further information and advice.
The content has been produced by staff from NIHR Applied Research Collaboration Oxford and Thames Valley; NIHR Oxford Biomedical Research Centre; and the University of Oxford’s Nuffield Department of Primary Care Health Sciences.
We want these resources to be as useful as possible and will update them regularly so we would welcome your feedback and suggestions.
Polly Kerr (firstname.lastname@example.org), PPI Manager, Nuffield Department of Primary Care Health Sciences
Claire Schwartz (email@example.com), Programme and PPI Manager, NIHR Applied Research Collaboration Oxford and Thames Valley
Rachel Taylor (firstname.lastname@example.org), Public and Community Involvement, Engagement and Participation Lead, NIHR Oxford Biomedical Research Centre
Angeli Vaid (email@example.com), Training and Inclusion Manager, NIHR Oxford Biomedical Research Centre
Nuffield Department of Primary Care Health Sciences
NIHR Oxford Biomedical Research Centre
Training and Inclusion Manager
NIHR Oxford Biomedical Research Centre
Programme and PPI Manager
NIHR Applied Research Collaboration Oxford and Thames Valley