Patient and Public Involvement/Engagement, sometimes known as ‘PPIE’ is the process in which researchers work with patients and members of the public to ensure that the healthcare research is relevant and addresses the needs of people who use healthcare services.
What is research in healthcare?
“Health and care research focuses on exploring and enhancing different aspects of health and care. These include patient care, disease prevention, and overall health. Health and care research aims to improve healthcare outcomes, enhance patient wellbeing, and influence health and care policies. Health and care research helps develop evidence-based solutions to challenges in the health and care sector.”
Introduction to health and care research | NIHR
What is public involvement?
“Public involvement in research is described as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. It is an active partnership between patients, the public, and researchers in the research process. When the public get involved in research, they work to help shape what research gets done, how it is carried out, and how the results are shared and applied in practice.”
Public involvement in research | NIHR
Photo Credits: Jack Latimer
Mythbusting Public Involvement
Will I be ‘tested on’?
Being a research participant is different from public involvement. Public involvement includes you more as a member of the research team to design and carry out the research. You could take part in a range of activities such as:
- supporting with designing a research project
- writing grant funding applications
- sharing your experiences within a meeting
- being involved in blog posts
Do I need to make a huge commitment to be involved?
The amount that you can get involved is up to you! You can be involved in a one-off activity for 1h or could get involved with a larger role within the research team which may require several hours a week for a few years. Timing of your involvement can also be flexible to work around working hours, childcare, or carer commitments.
Am I just going to end up giving up my time and get nothing in return?
All researchers are encouraged by funders and universities to consider development opportunities for public members which could support career building, learning new skills, training, or networking. NIHR also provides guidance to reimburse public members for their time as recognition that people take time out of their day to support research.
Do I need healthcare experience?
You don’t need experience as a professional to be involved in public involvement. Any lived experience is is valuable to share your perspectives of being a patient, service user, carer, or family member.
Will I make a difference?
Yes! Read the stories from public members below to find out more about how you could make a difference.