As well as asking people what changes they had seen in involvement, we asked them what they thought the future held and how they would like to see involvement develop. Some of the things people raised – such as better training for lay people and researchers, finding ways to measure the impact of involvement, and increasing the numbers and diversity of people involved, are discussed in more detail elsewhere.
People felt there was still a lot to do in terms of embedding involvement in research, and a need for strong strategic leadership. Dave A said he still felt as if ‘I’m preaching to the converted a lot of the time, and I’d like to get away from that.’
Clinical research without patient involvement should be seen as unethical. Roger B wants it to be compulsory for researchers to publish their research.
It’s important that patients are included in all cancer trials throughout the UK. But we need to start thinking about what aspects of involvement aren’t working and learning lessons for the future.
The next thing on the agenda is developing lay people to work strategically at national and international level.
Some lay people need to get involved at a political level, to push the government and NHS to take involvement really seriously.
Several people mentioned the need for more common approaches to measuring the impact of involvement, including providing them with feedback about the difference their involvement has made, better working across conditions and organisations, and more sharing of expertise and lessons learned. As Francesco said, ‘There’s a hell of a lot of silo working’; Brin felt getting involved in projects which were not about his condition (stroke) was ‘a bonus for me, you know, to move out of that sort of ghetto.’
Building networks of people involved across different conditions would be valuable.
Derek gets irritated by researchers keeping their’ lay people in silos. There should be a national register of involvement opportunities so people can spread into other areas.
People also identified different stages of the research process where they felt involvement needed to improve, such as early on in setting research questions and research design, and dissemination of findings at the other end. There was general agreement that better public awareness was important and people suggested engaging the public using the media, especially social media. They felt the NHS needed to do more to promote research and research participation to all patients.
People suggested there needed to be a culture change within research to ensure involvement wasn’t seen as a box-ticking exercise, but Peter suggested that the enthusiasm he’s seen in younger researchers indicates the future looks good for PPI. Richard said an important part of changing the culture would be to give involvement a better, more accurate name. Andrew felt we need to have some ‘clearer national strategies being implemented at local levels, which will encourage the kind of joining up between the research community, the professional research community, and patients as individuals’. Richard argued that ‘PPI itself doesn’t have a future – it’s a means to an end. So we have to look at where we’re going with research. And to me research should be an integral part of treatment and research into data should be an integral part of the data that we already have – and PPI then simply becomes part of those things.’
There is less of a tick-box approach than there was, but Helen would still like to see more involvement in designing research.
Sharon would like to see more public awareness of research. Opportunities to take part in research should be just a normal part of clinical care.
Richard wants to see research and data sharing for research really embedded throughout the NHS. The role of patient involvement is simply to support those goals.
There were some worries about how constant NHS reorganisation might damage involvement networks and relationships that had been carefully built up. Both Francesco and Andrew felt some recent reorganisation might make good involvement more difficult, and Andrew was also critical of an emphasis on medical research as a source of wealth creation for the country. Helena was worried that government commitment to investing in research could be withdrawn at any time, with implications for PPI. On the other hand, Dave G thought some recent events in the NHS had permanently changed the culture in favour of more ‘patient power’.