Take on board that the paradigm’s shifted, it’s changed. Citizen researchers are now going to be part of academic life. You may not like it, but get used to it because they are excellent.’ Dave G
There was general agreement with Dave G that the priority given to patient and public involvement had changed over the last few years. Kath suggested it was a combination of leadership from the top and pressure from individual lay people on the ground that had made the difference. Roger B praised the NHS National Institute for Health Research [NIHR] for helping to spread a culture of user involvement which began in mental health, HIV and cancer research to other fields. Tom and Carolyn pointed out how influential it has been that many research funding organisations now expect to see involvement in grant applications. The role of INVOLVE, the national NHS advisory group for research involvement, was also felt to be important.
The National Institute for Health Research has played an important role in promoting involvement. The UK is now a world leader in the field.
Derek has seen the number and range of people involved in research improve. In the early days the same few people had to do everything.
Rosie works with INVOLVE and feels it has been very important in promoting and supporting patient involvement in research.
Derek commented that now involvement was more accepted people could afford to ‘be a bit more bloody-minded rather than playing the gameI think I and others, because we were fighting for our place, acquiesced perhaps a little too much. But we acquiesced because my fear was if we didn’t play the game it would have been so easy to say, “Well we tried that and it didn’t work.” Because if you’re troublesome the doors can easily close.’ Margaret felt it had taken a while to persuade researchers not to see lay people as ‘somebody who’s going to hold up their study or put a like a spanner in the works.’ Carolyn thought researchers were getting better at not patronising lay people now they were more used to having them in the room.
It’s been a slow process to overcome a them and us’ culture, but now researchers just expect lay people to be in the room and to have a say.
Researchers with little training or experience of involvement can be patronising in meetings. Younger researchers and social scientists seem more open to it.
There were mixed views about the extent to which the research community genuinely valued patient and public involvement or whether it was still – for some – a ‘tick-box’ exercise. Tom, Neil and Carolyn described how attitudes had shifted but how more change was still needed. But there were also welcome signs that researchers had started to anticipate what patients would be worried about, were using less jargon, and were feeling more confident about asking for involvement.
These days Tom feels his views are actively asked for and it’s not a tick-box exercise, but theres still dinosaurs out there.
Generally involvement has moved from tokenism to lay people coming up with research ideas but occasionally researchers can still seem defensive.
There is still some tokenism around, but many researchers have realised this isn’t just a fad and now take it seriously.
While a lot of change has happened, people felt there were still improvements to be made. As Dave X said, ‘Rome wasn’t built in a day. It’s going to be a long road.’ Dave A commented, for example, ‘There are about something like 2,000 national portfolio trials in health research. So that is a big number, probably a quarter of those have had lay input. It needs to be more.’ People identified plenty of areas where they felt things still needed to improve (see also ‘The future of involvement‘, ‘Representing a range of views and experiences: diversity‘, ‘The value and impact of patient and public involvement in research‘ and ‘Difficulties and barriers to involvement‘). These included: more influence on research priorities and design; widening the range of people involved; improved training; more involvement in pharmaceutical industry research.
Researchers need to think about how to include a wider range of people. Payment is one way to support people with different needs.
There is less of a tick-box approach than there was, but Helen would still like to see more involvement in designing research.
Roger B is working to persuade pharmaceutical companies to have more patient involvement in their research.
Better understanding of the impact of involvement and more feedback from researchers was another area for improvement. But as Dave A pointed out, the very fact that lay people are now working so closely alongside researchers makes it harder to distinguish what difference they have made individually.
Lay people are now accepted without question but the more closely involved they are the harder it is to identify what difference they’ve made.
Andrew feels the debate about measuring the impact of involvement has barely moved on in three years, and some researchers still seem to be discovering involvement for the first time.