Patient and public involvement in research

What is patient and public involvement (‘PPI’) in research? Why does it matter?

INVOLVE is a national NHS advisory group that supports public involvement in health and social care research. INVOLVE defines public involvement as “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them”. By ‘public’ INVOLVE means patients and their relatives as well as members of the general public. They make a difference between:

Involvement – where people are actively involved in research projects and in research organisations.
Participation – where people take part in a research study.
Engagement – where information and knowledge about research is shared with the public.

We asked people what they think public involvement in research is for. Most strongly supported medical research as the best way to find cures; to improve care and treatment; to improve patients’ quality and length of life; and to prevent illness. But they felt research does not always address the things patients think most important. A common theme was helping medical researchers see things through the eyes of a patient, or a member of the public (which Derek called the “outside eye”). As Janice said, researchers’ “view of normality is different” and Carolyn said lay people bring a “different reality”.
At one level they suggested patient and public involvement is about making sure the right research is done and challenging research that may be driven by the interests of pharmaceutical (drug) companies or individual researchers. This might mean suggesting different research questions or priorities; helping medical researchers understand what outcomes matter most to patients; raising the profile of particular diseases or symptoms; challenging wasteful or unnecessary research.
At another level, people said patient and public involvement is not just about doing the right research, but making sure research is done right. Medical research needs people to agree to take part; it needs research participants. Patient and public input can help by making sure researchers explain clearly what their study is about; communicate more sensitively with people; design studies so they are easier to take part in and more efficient; and tell people the results. In some cases patients may get involved in doing the research, helping to collect data or analyse the findings from a patient perspective. (See ‘Types of involvement’).
People we talked to were often concerned that it wasn’t easy for patients and the public to know what research is going on. Several said part of being involved was about raising awareness of research, to help patients find out about NHS research in their area and encourage them to ask to be in trials. Richard, for example, summed up his PPI goals as explaining research to patients and encouraging them to take part. This role for lay people is sometimes called 'Patient Research Ambassador' by the National Institute for Health Research project Involvement4Access. (See ‘Raising awareness of opportunities for involvement and finding new volunteers’).

Funders of health and social care research increasingly say they will only give research grants where it is clear there has been patient and public involvement. People we talked to agreed with this in principle but were unhappy when researchers treated patient involvement as a tick-box exercise just to get their funding, especially if it came too late in the process to make any difference. (See Difficulties and barriers to involvement’).
It can be argued that involving people is a democratic right (because as tax-payers we all fund research), or that researchers have a moral duty to involve patients, even if it makes no real difference to the research that gets done. Kath said that for her the moral case was important but not enough: “This is a big investment that we are making, and so we ought to be contributing something. It’s not just about having quite a nice time.” However, Derek and Andrew thought the democratic argument was important.
The INVOLVE website has lots of useful information and advice for both members of the public and researchers, as well as links to other useful sites. 

(See also ‘Types of involvement’ and ‘What activities and tasks are involved?’).


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