- What is public involvement in research?
- Getting involved for the first time
- What can I do?
- What difference does involvement make?
- How can I get advice and support?
- About the interviewees
More on involvement
Find clinical trials
What is patient-led research?
This was patients saying "This is actually what we want you to look at, this is what we want you to test"
Lesley Roberts is a patient representative on a number of research groups.
Here she talks about when public involvement takes a step further and becomes "patient-led" research.
“You will probably have either a support group or a group of patients at a particular place, a hospital or a clinic or whatever, who are probably sitting around over coffee saying 'Wouldn’t it be nice if...', and then somebody may have mentioned it to the doctor who said 'Well how many of the rest of you think like that?'
This is exactly how it happened at Keele, and then they actually led the research, they were the movers and shakers of the research and the clinicians and researchers worked with them, rather than the other way round where you normally have a group of clinicians and researchers who will have a couple of patients tagged on, so they can prove patient involvement.
This was patients actually leading it and saying "This is actually what we want you to look at, this is what we want you to test, and this is how we feel it should go.'”
Page last edited: 25 November 2011