Scroll down to these items: Intro / 2. Finance guide / 3. Remote PPI / 4. Making documents accessible / 5. Key PPI resources for health researchers / 6. In development: collection of articles
Please email Lucy Lloyd with suggested content, corrections or new resources
1. Introduction
This page is a resource page on Patient and Public Involvement (PPI) . 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’s Involve team 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, 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.
Here are some examples of the range of activities that PPI representatives might do, with planning and support:
- identify research priorities
- review funding applications
- be co-applicants on a research project
- be joint grant holders
- join project advisory or steering groups
- recruit, manage, lead PPI advisory groups
- develop information for participants, recruitment materials, patient information leaflets
- advise on recruitment methods
- help manage/moderate online community fora
- conduct interviews with research participants or conduct focus groups
- contribute to dissemination plans and outputs
- co-author journal articles (see useful guidance in 2020 article here)
- be media spokespeople for the research
- present the research at conferences and events
Public involvement is often conducted alongside public engagement and research participation, and the activities can 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, Dr Diogo Gomes is the Clinical School’s public engagement coordinator. Contact him with any questions or for updates on University resources, training and vehicles available. The National Coordinating Centre for Public Involvement helps to engage universities with the public, through training, resources and support for researchers building their public engagement capacities. And see the enormous wealth of public engagement resources for Cambridge researchers at Public engagement at the University of Cambridge and Public Engagement Bulletin
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. Find out more about recruiting participants to trials via Be Part of Research (nihr.ac.uk) and NHS Choices information on clinical research.
2. Paying fees to patients and the public who are involved in your research
This Quick Guide, published on the Department’s intranet (use your RAVEN password for access), will help you
- decide whether fees are appropriate;
- explore other rewards that can also be offered;
- decide how much to pay;
- 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 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.
3. Resources on connecting with patients and the public remotely
As the COVID-19 period continues, researchers are adjusting to using virtual tools for all their PPI work and for building connections with patients and the public.
Resources will be collected here:
NIHR School for Primary Care Research virtual PPI page (updated April 2020)
Leaflet on Virtual Involvement for members of the public on joining virtual meetings (June 2020)
4. 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.
5. 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 – 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: PCU researchers and research groups can request access to this panel of around 80 members of the public to get dialogue and feedback on various aspects of their research projects. This service is focused on public involvement and is well organised and streamlined. Available to researchers on the Biomedical Campus regardless of funding source.
The service is divided into two main streams:
- Document review: researcher documents, such as funding proposals, lay summaries, project outlines, patient information sheets can be sent to the panel for feedback and opinions;
- Focus groups: to offer a more interactive look at projects/ideas/documents.
Researchers are welcome to contact Treena Becker if they would like to involve the PPI panel in their work and have questions about the process. If researchers would like to discuss their projects in order to develop a PPI plan, contact Dr Amanda Stranks for advice or to request access to the panel.
For more information: https://cambridgebrc.nihr.ac.uk/public
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. Contact Iliana if you’d like advice on this area of work.
NIHR School for Primary Care Research
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. The School’s PPI coordinator is Dr Esther van Vliet.
NIHR ARC East of England
Further information on PPI http://www.arc-eoe.nihr.ac.uk
NIHR Centre for Engagement and Dissemination
NIHR Centre for Engagement and Dissemination has produced updated resources supporting patient and public involvement. All NIHR’s PPI resources will be collected at Learning for Involvement. In addition, some ‘introductory’ resources have been embedded into the audience sections of the main NIHR website. For example, you can find information for researchers here, and for patients and the public here.
National Co-ordinating Centre for Public Engagement (NCPPE)
This organisation is specifically to help universities and researchers engage with the public. Resources include guidance on engagement methods, funding sources and evaluation, plus case studies. http://www.publicengagement.ac.uk
6. 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
Page last updated 07/04/2021, Lucy Lloyd