Patient and Public Involvement Page Contents: Intro / 1. Resources for members of the public / 2. Primary Care Unit resources: Researcher PPI checklist and 2020 PPI Audit / 3. Finance guide / 4. Remote PPI / 5. Making documents accessible / 6. Key PPI resources for health researchers / 7. Collection of articles / 8. Public engagement and participation in research
Introduction
This page is a resource page on Patient and Public Involvement (PPI). It’s for researchers but we have included some information that can be shared with members of the public.
PPI means research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.”
When using the term ‘public’ we follow NIHR and include patients, potential patients, carers and people who use health and social care services as well as people from organisations that represent people who use services.
Patients and the public are key to the design, conduct and quality of our research at PCU, whether we are exploring better ways to help people stop smoking, take their tablets as prescribed, or to diagnose cancer, type 2 diabetes and atrial fibrillation earlier, or to improve care for people at the end of life and improve support for their loved ones.
Public involvement is about being a member of the team that works together to design and run the study or trial.
Here are some examples of how PPI representatives might get involved with the research team:
Plan research
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often public contributors help decide on research priorities and contribute to funding applications
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some PPI contributors are co-applicants on a research project and/or joint grant holders
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they can join project teams and committees and lead PPI advisory groups
Help find participants
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make sure information is easy to understand
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advise on ways to recruit participants
Carry out research and work with participants
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public contributors sometimes manage/moderate online community fora
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they might conduct interviews with research participants or help conduct focus groups
Share the research
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often, public contributors help disseminate the research and sometimes co-author journal articles (see useful guidance in 2020 article here)
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they can be media spokespeople for the research or present the research at conferences and events.
Appropriate support and training is essential to empower public contributors and enable meaningful input. See our PPI checklist for ideas and tips for researchers.
For members of the public
1. For members of the public who want to get involved in research
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This Starting Out Guide from the National Institute for Health Research (NIHR) is for members of the public who would like to get involved in research. You’ll find key information and principles about getting involved in research, whatever your experience or prior knowledge.
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You can find a detailed list of types of activities you might get asked to do in this Public Information Pack published by NIHR.
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If you want to start contributing in the Cambridge region, look at the work of the Cambridge University Hospitals (CUH) Patient & Public Involvement (PPI) panel. You can find out more about the panel here.
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The People in Research website is a database of opportunities for members of the public to get involved in research across the UK.
For researchers
2. PPI checklist and PCU’s PPI Audit
This Researcher PPI checklist, written by Miranda Van Emmenis at the Primary Care Unit, was prepared to help primary care researchers think through the various steps involved in PPI. There are six sections, each themed around the NIHR standards for involvement. The checklist is based on the 2020 PPI Audit conducted at the Primary Care Unit. The checklist includes advice on:
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How to offer inclusive opportunities to members of the public: involving people from minoritised groups or those from communities whose voices are seldom listened to, ideas for widening the PPI sample, use of a ‘buddy’ system.
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How to work together successfully: guidance for creating a ‘job specification’ for members of the public, how to manage PPI meetings effectively.
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How to offer support and learning opportunities to members of the public: example induction materials from other projects.
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How to involve members of the public in research governance: ideas for incorporating PPI at ‘senior’ levels of a research project.
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Best practice for communication: sharing regular updates and study outputs with members of the public.
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How to record impact of PPI: templates to help you log your PPI activities and outcomes.
Download the Researcher PPI checklist and the 2020 PPI Audit.
3. Finance Guide
This Quick Finance Guide, published on the Department’s intranet (use your RAVEN password for access), will help you
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decide whether fees are appropriate;
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explore other rewards that can also be offered;
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decide how much to pay;
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follow the administrative route to take when you want payments to be made.
The Guide was developed from work done at THIS Institute to help researchers at the Department of Public Health and Primary Care who are considering paying fees to their PPI representatives.
Comprehensive updated payment guidance was published for researchers and coordinators by NIHR in April 2021, covering good practice, budgeting, payment rates, welfare benefits, tax and employment status and payments for children and young people and more topics. This shorter guide is aimed at PPI contributors.
4. Remote PPI
Tried and tested ways to engage remotely with patients and the public.
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NIHR School for Primary Care Research virtual PPI page
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Leaflet on Video Meetings for members of the public joining virtual meetings.
5. Making documents accessible
In September 2018 new accessibility regulations came into force for public-sector bodies, setting new requirements to improve the accessibility of our public documents. These rules were required to be implemented by September 2020.
Accessible documents and web pages make it easy for people who use adaptive technology (for example screen readers, speech recognition and mouse alternatives) to access the information they contain and work their way through them.
The NIHR Cambridge Biomedical Research Centre has produced very useful step-by-step guidance on making documents accessible.
6. Key resources for health researchers
PCU health researchers frequently access advice, capacity and resources from external organisations to help them plan, develop and carry out PPI activities. They may also work with agencies that recruit, support and train patients and members of the public, and with specialist groups with particular experience of caring, or of specific conditions, for example.
Some of our researchers have worked successfully with external private contractors, notably Sally Crowe at http://www.crowe-associates.co.uk
Here are some connections that may be useful if you are looking to get started:
University of Cambridge and public involvement
THIS Institute: published a review on public involvement in August 2019 called Involving patients and the public in research. The report authors conducted a rapid review of the literature on this topic and conducted interviews with experts in this field to throw light on the field, what works and what the challenges and unknowns are.
Cambridge Biomedical Research Centre PPI team: for all Cambridge-based researchers to get dialogue and feedback on various aspects of their research projects. Available to researchers on the Biomedical Campus regardless of funding source.
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See more on our PPI for Researchers webpage and submit an enquiry about your PPI plans or to work with the large and well-organised PPI panel. View the Researchers’ PPI Pack. You can also request expert advice and view the Cambridge BRC PPI Strategy.
Cambridgeshire and Peterborough NHS Foundation Trust
Iliana Rokkou is the User and Carer R&D Manager at Cambridgeshire & Peterborough NHS Foundation Trust. She manages the PPI programme for CPFT Research & Development – focusing on supporting partnership working between experts by experience and researchers in mental health and dementia research.
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Contact Iliana if you’d like advice on this area of work.
NIHR School for Primary Care Research
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The School has put together an information hub about PPI which includes signposts, case studies and resources, including examples from research at the Primary Care Unit.
NIHR Research Design Service East of England
Guidance and resources on the different ways that members of the public can be involved in research including: how to involve members of the public in research, how to budget for public involvement, public involvement in different stages of the research cycle
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Andrew Sharpe provides support to researchers at Cambridge: Andrew.sharpe2@nhs.net
NIHR ARC East of England
NIHR Centre for Engagement and Dissemination
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Resources supporting patient and public involvement. All NIHR’s PPI resources are collected at Learning for Involvement.
- NIHR’s Race Equality in Public Involvement Framework
PIRRIST guidance
This guidance is particularly helpful if you’re planning to set up a PPI group for a long-term project, such as a Randomised Controlled Trial.
NIHR UK standards for public involvement
Each of the six standards provide examples of what good public involvement looks like, with questions to help you reflect on and evaluate your own PPI strategy.
7. Useful papers
Articles of interest
Sarah Ball, Brandi Leach, Jennifer Bousfield, Pamina Smith, Sonja Marjanovic, “Arts-based approaches to public engagement with research: Lessons from a rapid review. RAND“. RAND Corporation, Jan 11, 2021. https://doi.org/10.7249/RRA194-1
Jill Russell, Nina Fudge & Trish Greenhalgh ‘The impact of public involvement in health research: what are we measuring? Why are we measuring it? Should we stop measuring it?‘ in Research Involvement and Engagement, October 2020 doi: 10.1186/s40900-020-00239-w
Halle Johnson, Margaret Ogden, Lisa Jane Brighton, Simon Noah Etkind, Adejoke O Oluyase, Emeka Chukwusa, Peihan Yu, Susanne de Wolf-Linder, Pam Smith, Sylvia Bailey, Jonathan Koffman, Catherine J Evans: ‘Patient and public involvement in palliative care research: What works, and why? A qualitative evaluation’ in Palliative Medicine. Sept 11 2020. https://doi.org/10.1177%2F0269216320956819
Patient and public involvement in general practice research‘ in
Trisha Greenhalgh, Lisa Hinton, Teresa Finlay, Alastair Macfarlane, Nick Fahy, Ben Clyde, Alan Chant ‘Frameworks for supporting patient and public involvement in research: Systematic review and co‐design pilot‘ in Health Expectations, April 2019. doi.org/10.1111/hex.12888
Sarah Ball, Amelia Harshfield, Asha Carpenter, Adam Bertscher, Sonja Marjanovic, “Patient and public involvement and engagement in research: Enabling meaningful contributions“. RAND Corporation, Feb 14 2019. DOI: https://doi.org/10.7249/RR2678
Dawn P. Richards, Kathryn A. Birnie, Kathleen Eubanks, Therese Lane, Delane Linkiewich, Lesley Singer, Jennifer N. Stinson & Kimberly N. Begley. “Guidance on authorship with and acknowledgement of patient partners in patient-oriented research“. Research Inv and Eng. July 2020
Useful journals
There are two journals that can be useful starting points if you are looking for literature on topics related to public involvement:
Research Involvement and Engagement and Research for All
8. Explainer: what’s the difference between public involvement, public engagement and participation in research?Public involvement (as defined at the top of this page) is often conducted alongside public engagement and research participation. The activities can easily become confused, for researchers and for members of the public. Here are some definitions and a few resources on engagement and participation. Public engagement is when researchers share information and knowledge about research with members of the public. If you’re here to look for resources on public engagement, see the University’s website on public engagement, for information about the Cambridge Festival, Engaged Researcher training and much more.
Participation in research is when people take part in a study, such as responding to a survey, joining a clinical trial, providing data or joining a focus group. If you need resources on participation, try these starting points:
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Page last updated 06/04/2022. Please email Lucy Lloyd with suggested content, corrections or new resources.