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’.
Nadeem thinks he could be a critical friend’, reminding researchers of the human side and sharing knowledge of different communities.
Catherine brings a carer’s view. She will never be on the same side as the professionals because of her experience of her husband’s terminal illness.
Understanding the patient view can help doctors make their research more meaningful and relevant.
Maxine describes what happened in a James Lind Alliance Priority Setting Partnership on skin research and how it has led to new research proposals.
Lay reviewers of a stroke research proposal felt the question wasn’t worth asking. It’s important not to waste public money.
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‘).
Beryl explains how lay input can improve the information given to research participants so it is clear to them what the trial is about.
Catherine was distressed by the logo the researchers wanted to use in their study. She was pleased she spoke up about it because they changed it.
Patient involvement can help make studies acceptable to patients and information about research easy to understand.
Richard says it’s easier for patients to say yes to a study if it’s been designed around their needs. Patient involvement also helps ensure the right questions are asked.
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‘).
Some researchers treat patient involvement as a tick box exercise, which Andrew thinks defeats its purpose.
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.