The importance and benefits of Patient and Public Involvement and Engagement

By Dr Ali Aries, Dr Ros Leslie, Paul Bailey and Reena Palmer

Patient and public involvement and engagement (PPIE) has been evolving since 2007 when the department of health first introduced the idea.(1) The NIHR describe PPIE in research as ‘research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, or ‘about’ or ‘for’ them’.(2) PPIE in research is now much more common, often expected by funders,(3, 4) and has great benefits for both the researchers and the PPIE contributors.(5) Following a recent pilot and feasibility study, (6) where PPIE was integral to the methodology, there has been an opportunity to reflect further on the value of PPIE and consider ways for improving and developing PPIE in the future.
Involving PPIE contributors in research is important because it helps researchers understand the lived experience of people living with a certain condition e.g., stroke. Their involvement, therefore, helps keep research of healthcare interventions relevant for people with a particular condition.
PPIE contributors from different cultures can also ensure that the research is developed and conducted in an appropriate way to make it meaningful for people from different backgrounds. A recent quote from one of our PPIE contributors, Reena Palmer, who is also an author of this article, expresses the importance of this for consideration for all our future research:
“From my experience, I know from my background Asian culture that the community does not really have an understanding of what a stroke is and how it can affect loved ones around them…it would be good if we can get the right information out there to the people who need it”

PPIE contributors add an important element to a team because they see things that researchers/educators/healthcare workers might miss because they have a different perspective on life and activities. When considering how our PPIE contributors can work within our research teams we follow the UK standards for public involvement.(7)
This means we consider the following aspects:
1) Inclusive opportunities – we always endeavour to work with people of different ages and from different backgrounds and particularly like to hear from a variety of cultural communities and lesser-heard voices.
2) Working together – we value and respect our PPIE contributors and work in true partnership with them.
3) Support and learning – we understand that for some roles our PPIE contributors need to be trained and supported. We listen to their needs and offer learning experiences appropriate to our individual PPIE members.
4) Governance – We encourage our PPIE contributors to be part of our meetings e.g., trial management groups and part of research community meetings e.g., the Physiotherapy Research Society.
5) Communication – we are conscious of the importance of communicating in an appropriate way with our PPIE contributors – avoiding jargon and ensuring lay language is used. We are also very conscious of the digital divide; it is important we have an awareness and try to address digital inequalities.(8) We seek to offer opportunities for our PPIE contributors to work with us in a way that suits their needs e.g., face-to-face or by telephone or post if they do not use a computer, use email or online communication methods.
6) Impact – We are very aware of the impact our PPIE input has on our research and endeavour to include PPIE work throughout the research cycle, from an early stage helping with idea generation and advising on research activities, throughout the research process and in the dissemination phase e.g., presenting and sharing findings from research studies at conferences:

Our PPIE contributors are invaluable when it comes to writing plain English summaries explaining our research and when developing participant information sheets. They work as part of the research team, for example in our recent pilot and feasibility study, (6) PPIE contributors were appropriately trained to undertake a note-taking role within the focus groups and to help with interpreting the transcripts. This was particularly helpful because they can offer an alternative opinion by coming from a different perspective, adding another dimension to the analysis of the data.
However, it is not just the value that PPIE contributors bring to our work, but also that our PPIE contributors find benefits from being involved. Paul Bailey, another author of this article and PPIE contributor stated:
“I personally feel that my life has improved, and I have met some great people and learnt things about myself that have made my life easier and improved the life of others”.
Clearly, there are mutual benefits for all involved.(5) PPIE is recognised in Health Education England’s first Research and Innovation Strategy for Allied Health Professions (AHPs), (9) which reflects the future direction for AHPs in delivering quality research to meet the future health demands of the population. The strategy emphasises the importance of excellence in evidence-based Allied Health practice, drawing upon expertise from the public voice.
No prior experience is necessary for people who would like to work in a PPIE contributor role. Our PPIE contributors are already ‘experts’ relating to their own conditions and experiences. Further training, as required, can be undertaken while fulfilling the role.

If you would like to become a PPIE contributor, particularly if you have experience relating to stroke as either a person who has experienced a stroke or as a carer of someone, please, contact: Dr Ali Aries at [email protected]

1. DOH. Department of Health – Personal and Public Involvement (PPIE) [Available from: https://www.health-ni.gov.uk/topics/safety-and-quality-standards/personal-and-public-involvement-PPIE.]
2. Hayes H, Buckland S, Tarpey M. NIHR – INVOLVE: Briefing notes for researchers: public involvement in NHS, public health and social care research. 2012.
3. Staniszewska S, Brett J, Mockford C, Barber R, Staniszewska S, Brett J, et al. The GRIPP checklist: strengthening the quality of patient and public involvement reporting in research. International Journal of Technology Assessment in Health Care. 2011;27(4):391-9.
4. NIHR. Patient and public Involvement Reseources for applicants to NIHR research 2019 [Available from: https://www.nihr.ac.uk/documents/PPIE-patient-and-public-involvement-resources-for-applicants-to-nihr-research-programmes/23437.]
5. Aries AM, Bailey P, Hunter SM. The mutual benefits of patient and public involvement in research: an example from a feasibility study (MoTaStim-Foot). Research Involvement and Engagement. 2021;7(1):87.
6. Aries AM, Pomeroy VM, Sim J, Read S, Hunter SM. Sensory stimulation of the foot and ankle early post-stroke: A pilot and feasibility study. Frontiers in Neurology. 2021;12:675106.
7. UK Public Involvement Standards Development Partnership. UK Standards for Public Involvement. 2019. [Available from: https://sites.google.com/nihr.ac.uk/pi-standards/home]
8. Davies AR, Honeyman M, Gann B. Addressing the digital inverse care law in the time of COVID-19: Potential for digital technology to exacerbate or mitigate health inequalities. Journal of Medical Internet Research. 2021;23(4).
9. Health Education England. Allied Health Professions’ Research and Innovation Strategy for England 2022 [Available from: https://www.hee.nhs.uk/sites/default/files/documents/HEE%20Allied%20Health%20Professions%20Research%20and%20Innovation%20Strategy%20FINAL_0.pdf.]