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Patient and Public Involvement

You are here: Home > Getting involved with research > Patient and public involvement (PPI) Researcher Guidance

Patient and public involvement (PPI) Researcher Guidance


Professor Gavin Screaton

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, 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 December 2021.


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 Researcher 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.

This 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 relevant 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 (polly.kerr@phc.ox.ac.uk), PPI Manager, Nuffield Department of Primary Care Health Sciences

Claire Schwartz (claire.schwartz@phc.ox.ac.uk), Programme and PPI Manager, NIHR Applied Research Collaboration Oxford and Thames Valley

Rachel Taylor (rachel.taylor@ouh.nhs.uk), M: 07500 095526 Public and Community Involvement, Engagement and Participation Lead, NIHR Oxford Biomedical Research Centre

Angeli Vaid (angeli.vaid@ouh.nhs.uk), Training and Inclusion Manager, NIHR Oxford Biomedical Research Centre

Polly Kerr PPI Manager Nuffield Dept. of Primary Care Health Sciences
Rachel Taylor PCIEP Lead NIHR Oxford Biomedical Research Centre
Angeli Vaid
Training and Inclusion Manager NIHR Oxford Biomedical Research Centre
Claire Schwartz Programme and PPI Manager NIHR Applied Research Collaboration Oxford and Thames Valley

Next: Section 2 – What is Patient and Public Involvement? >

Post an opportunity for patient and public involvement

PPI RESEARCHER GUIDANCE

  • Section 1 – Foreword and Introduction
    • Foreword by Professor Gavin Screaton
    • Introduction
  • Section 2 – What is Patient and Public Involvement?
    • Patient and public involvement, engagement and participation definitions
    • Why involve the public in research?
    • Funding body requirements: NIHR, UKRI and Wellcome
    • Academic literature requirements
    • PPI strategies
    • Standards and best practice
    • Why patients and the public want to get involved
    • Involving people from diverse and ‘under-served’ groups
    • Ethical approval
    • Costing and funding patient and public involvement
  • Section 3 – PPI and the Research Pathway
    • The research cycle
    • PPI opportunities in the research pathway
    • Case studies across the research pathway
  • Section 4 – PPI in Practice
    • Recruiting patients and the public
      • Deciding who to involve
      • PPI groups and recruitment websites
      • Advertising for PPI contributors
      • Where to advertise
      • Template for advertisement for PPI contributor
    • Communicating with patients and the public
      • Writing in plain English
      • Social Media
    • Support and guidance for patients and the public
      • Role descriptions and interviews
      • Templates for working agreements
      • Induction and welcomes
      • Training and support for PPI contributors
      • Thanking and giving feedback to PPI contributors
      • Payment for PPI contributors
      • Benefits advice and support
    • Guidance for meetings and other PPI activities
      • Guidance for online meetings
      • Guidance for in-person meetings
      • Terms of Reference
      • Consent to share personal information
  • Section 5 – PPI Resources for Researchers
    • PPI leads and coordinators
    • PPI groups, Oxford
    • Training and support
    • Recruitment websites
    • Organisations supporting PPI in research, nationally
    • Funding opportunities supporting PPI in research

Public engagement for researchers

  • Public engagement for researchers
    • Public Engagement Case Study – Breathe Oxford at the Royal Society Summer Science Exhibition
    • Public Engagement Case Study – GenExpressID study: working with a patient interest group

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