Involvement in research
What are ‘involvement’ and ‘engagement’?
Patient and public involvement and engagement (PPIE) are about building meaningful partnerships between researchers, patients and publics 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 publics 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)