Patient, Public Involvement and Engagement
Patient, Public Involvement and Engagement (PPIE or PPI) is increasingly required or expected by NIHR and other funders as part of research programmes, prior to submitting grant applications, or at the point of formulating research ideas.
What is PPI or PPIE?
Patient and public involvement and engagement (PPIE) describes the different ways in which members of the public can inform and shape the design and conduct of research.
PPIE is different to research participation where participants take part in a study.
Public involvement can improve the quality and relevance of research, as well as serving the broader democratic principles of citizenship, accountability and transparency (that is, people who are affected by research have a right to have a say in it). It can also empower people who use healthcare services, providing them the opportunity to influence research that is relevant to them. Definitions of public involvement and engagement are given at the end of this document.
Examples of how members of the public might get involved in research include:
- as joint grant holders or co-applicants on a research project
- identifying research priorities
- as members of a project advisory or steering group
- commenting on and developing patient information leaflets or other research materials
PPIE cannot be used to collect data for research, or recruit participants for research.
An overview of public involvement processes and recommended practices is provided by the NIHR. Please read the NIHR briefing document carefully before undertaking any PPIE activities.
If you are conducting PPIE through another university or NHS organisation, you will need to follow their institutional guidelines. PPIE practices vary across different institutions and may also vary according to requirements of funders.
Does PPI require ethics review?
Patient and Public Involvement activities undertaken as part of the design of a study or grant proposal at Loughborough University do not require ethics review providing it does not involve increased risk to participants, vulnerable participants or invasive procedures.
Ethics review is required for PPIE for activities that include:
- Vulnerable patients or public groups
- Anyone under 18 years of age
- Proof-of-concept work/feasibility studies
Should I provide an information leaflet for those taking part PPIE activities?
Researchers should provide written information to their PPIE group or members of the public about what will be expected of them. This could be in the form of an information leaflet or welcome pack. The information can cover details such as: i) what the role entails, ii) how often, when and where (in person or face-to-face) meetings will be held, iii) how PPIE members will be asked to contribute, iv) whether they will receive remuneration or expenses, and v) how they might benefit from involvement.
Do I need to obtain informed consent from people taking part in PPIE?
It is good practice for those taking part in public involvement to provide written consent for the planned activities. This ensures that PPIE members have read the information provided, know what they are committing to and what they will get back from the process. We would encourage staff to do this, even if their PPIE work does not require ethics approval. This also means that PPIE members know whether their data will be stored and how it might be used, in compliance with data protection and GDPR (see below for further information).
Does PPIE require a risk assessment?
Researchers must complete a risk assessment.
Where can PPIE activities take place?
PPIE may take place on the University campus but can also be held off campus. Familiar environments or locations that are easily accessible may be preferred for some groups.
For online PPIE, tips are available via Guidance on how to hold a PPI meeting using virtual tools from the NIHR.
What should I do about payment for those taking part in PPIE?
NIHR provides good practice guidance on payment and recognition for PPIE. There are many things to consider, so please read the NIHR information carefully. There are additional considerations for people who are receiving benefits. Sometimes a direct payment is made, or remuneration given in the form of vouchers. In other cases, just travel and expenses may be covered for those taking part in PPIE. It is important to ensure that the public are not financially worse off through being involved in PPIE. Researchers must have a clear payment policy and communicate this to PPIE members before activities takes place.
Can I keep the details of people who have taken part in PPIE?
Please follow the Loughborough University policies on data protection and GDPR regarding any details of people/the public who have taken part. If PPIE members have consented to you keeping their contact details, please ensure that no other personal information is stored with these. Reconsent to keep their contact details should be obtained every 12 months.
How does PPIE differ from qualitative research?
PPIE must not be used for recruiting participants or collecting research data. The table below has been drawn up by NIHR to outline the key differences between qualitative research and PPIE in broad terms (Source: Hanley, B, Staley, K, Steward, D, Barber [1]).
|
|
Qualitative research project |
PPIE Involvement in a research project |
|
Research question |
Aims to answer a research question |
Aims to help select and refine a research question |
|
Practical approach |
Follows a chosen method based on theory |
Researchers and patients/public exchange views in a way that suits both |
|
People involved |
Seeks views from a defined sample |
Seeks a range of perspectives from people with diverse experiences |
|
Ethical approval |
Requires ethical approval |
Needs to reflect ethical practice, but does not normally need ethical approval [2] |
|
People’s input |
Seeks people’s input as data to answer a research question |
Seeks people’s input to inform and influence decisions about how research is designed, undertaken and disseminated |
|
Power |
Only researchers have the power to make decisions about how the project is run |
Patients, the public and researchers share power to make joint decisions about how the project is run, based on their combined views |
|
Use of findings |
Generates findings that may have wider application |
Generates insight and learning that may be specific to the researchers and patients/public involved and their particular project |
Sources of further advice and information on PPIE
The National Coordinating Centre for Public Engagement has excellent resources for public engagement.
Tips for researchers involving unpaid carers in health and care research
The East Midlands Academic Health Science Network PPI webpages have a number of top tips leaflets for engaging with various communities.
Definitions
Public involvement: carrying out research ‘with’ or ‘by’ members of the public rather than ’to’, ‘about’, or ‘for’ them.
Public: this includes patients, potential patients, carers and people who use health and social care services, as well as people from specific communities or organisations that represent people who use services. It also includes people with lived experiences of one or more health conditions, whether they’re current patients or not.
Engagement: where information and knowledge about research is provided and disseminated.
Participation / Participants: where people take part in a research study.
References
[1] https://www.learningforinvolvement.org.uk/content/resource/qualitative-research-and-patient-and-public-involvement-in-health-and-social-care-research-what-are-the-key-differences/ (Accessed 27/10/2023)
[2] NIHR, Briefing notes for researchers, April 2021, https://www.nihr.ac.uk/documents/briefing-notes-for-researchers-public-involvement-in-nhs-health-and-social-care-research/27371#organising-and-hosting-meetings (Accessed 12/10/2023).
(Acknowledgement - originally developed by the School of Sports, Exercise & Health Sciences)