Involvement in research

This is an image of three people sat around the table. They have papers and coffee cups on the table in front of them.They are having a discussion. In the background you can see more groups of people having a discussion.

What are ‘involvement’ and ‘engagement’?

Patient and public involvement and engagement (PPIE) are about building meaningful partnerships between researchers, patients and the public to shape the relevancy and acceptability of health research.

A key aspect of our Centre’s support for research is carried out by the PPIE team. We advise and train researchers at Moorfields Eye Hospital and the UCL Institute of Ophthalmology in how to facilitate conversations and engage with patient and public audiences.

We actively promote and encourage the move towards a culture of active patient and public involvement (PPI), where research is carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.

Benefits of meaningful partnerships for research (ref: 1-4):

  • Raises awareness of research and establishes long-term relationships with patients and publics

  • Helps us to understand the patient experience better and prioritise the publics most important research questions, and set relevant research outcomes

  • Benefits recruitment and retention rates by improving the accessibility of research protocols so that participant experience is improved

  • Provides proof of greater relevancy and acceptability of research, which improves the likelihood of securing funding and being granted ethics

  • Supports dissemination of research by informing how best to report findings so that they are meaningful, understandable and in plain English

Benefits of meaningful partnerships for patients/publics (ref: 1,3):

  • Feelings of personal benefit: empowered, heard, more positive, confident, fulfilled, satisfied, supported

  • Opportunity for social interaction and reduced isolation

  • Chance to give back to the ‘research’ community

  • Greater knowledge of/more open attitude and sense of trust towards research

  • Better information about/capacity to manage one's condition

  • Gain of new skills

PPIE and the research cycle

  • Patients and the public can be involved and engaged at every stage of the research cycle (ref: 5-7)

  • It is never too late to involve patients and publics in your research, but PPIE is most effective the earlier it is undertaken and when there are clear aims, objectives and roles laid out (ref: 8)

  • PPIE is more than just telling people what you do, it should involve a two-way exchange that generates benefits and/or influences change for research and for researchers, patients and/or public alike (ref: 5,9)

  • PPIE isn't when people take part in the research, this is participation. However, PPI does have positive benefits for recruitment and retention of research participants (ref: 1,2,10)

A simplified version of the research cycle. A circle is at the centre divided into three sections to represent the phases of research: develop (in orange), implement (in red) and report (in green). Around the outside of the circle are six arrows representing six major steps in research, two per phase: Identify the question and design the study (orange arrows), Carry out the study and analyse the results (red arrows), publish the results and share the findings (green arrows)