People can be involved in research in many ways depending on their time and interests. As Dave G put it, ‘I think really you make your own involvement.’ At one level, this can be helping researchers with an individual study that has already been designed and funded, or getting involved earlier in designing a study, right through to national level, strategic work.
Maggies breast cancer group comments on leaflets for individual trials but also provides input to many local and national studies and organisations.
Carolyn describes seeing a trial through from the initial idea to sitting on the trial steering committee. She has helped recruit patients with a podcast.
Patient involvement in designing trial and leaflets about research can make it more likely people will take part. Richard has also helped set national research priorities for cancer.
In some cases people may be heavily involved in designing a research study, be included as one of the ‘co-applicants’ writing the grant proposal, and/or do some of the research themselves. But not everyone wants to do this. Some of the people we spoke to thought it might be off-putting to others if they thought they’d have to do complex things like analysing data. On the other hand, people sometimes felt there were barriers to getting involved at this level and felt it only happened on researchers’ terms.
Becoming involved as a co-researcher has been most common in mental health, where people are often involved in interviewing or surveying fellow users, but it is starting to happen in other subject areas and research methods too. Anthony explained how much he enjoyed helping to collect and analyse data for a study into how local hospital services should be reorganised. Maxine has used her skills as a librarian to analyse research evidence.
Maxine was encouraged to lead a systematic review’* on the skin condition vitiligo, analysing all the research evidence published in different medical journals.
Fenella developed her own research proposal with the Mental Health Research Network, which was shortlisted for funding. They’ll try again.
In Maxine’s case she became the lead author on an academic publication and was supported by the other co-authors who had the necessary skills and expertise. Richard was also very proud to have been involved as a co-author on a paper, but commented that ‘the process was much longer and harder than I thought it would be.’ Publishing academic articles is one important part of making sure research findings are shared publicly or ‘disseminated’, but there are other ways to spread information about findings, including preparing easy-to-read summaries for patients and speaking at events. Again, this is not for everyone – whilst some said they would be terrified if they had to speak in public, Dave G said he’d got used to it over time. ‘I’ve got much more confidence now in talking to a whole, whole loads of people. It doesn’t reduce me to a quivering wreck anymore.’
Good presentation of the aims and results of research is crucial, but researchers don’t always do it well. Neil has spoken at conferences and re-written lay summaries.
As co-researchers, people can get involved in designing studies, collecting and analysing data, and disseminating findings through talks and written papers.
At a different level, patients and members of the public are involved in deciding which studies get funded. This can include sitting on national funding bodies such as national research councils, medical research charities and the various funding programmes run by the NHS National Institute for Health Research. There are also opportunities to get involved in setting priorities for research, both by sitting on national or even international bodies (including Royal Colleges, the National Cancer Research Institute, and Clinical Studies Groups) and by taking part in initiatives such as James Lind Alliance Priority Setting Partnerships and conferences.
Dave A compares his experiences of work with the Medical Research Council, the National Cancer Research Institute and a local involvement group.
Peter has found involvement in national research strategy interesting but challenging.
Anthony is a member of a Research for Patient Benefit’ panel which decides which research proposals will be funded.
An important part of the process of approving medical research is making sure it is ‘ethical’ – before a study can start, an NHS Research Ethics Committees reviews the design and the information that will be provided to participants to make sure they are as safe and well informed as possible. All ethics committees include patient or public members. Janice, who was a college lecturer, joined a committee after one of her students had a bad experience getting ethical approval.
Janice originally joined a research ethics committee because she wanted to improve their understanding of qualitative interview research. She ended up becoming the Chair.
NHS Research Networks are another setting for patient and public involvement. Research Networks exist to raise awareness of research opportunities to patients and NHS staff and improve the quality, speed and coordination of research.
Some of the people we spoke to had also contributed to developing strategies for improving patient and public involvement locally or nationally (for example working with INVOLVE, a national advisory group that supports greater public involvement in NHS, public health and social care research), raising the public profile of medical research, and passing on their experience by training people who are new to involvement or recruiting new volunteers. A few had become paid involvement coordinators or started studying patient and public involvement for a PhD, although they stressed that people didn’t have to be involved to this extent.
Brin produced a film publicising patient and public involvement for the Stroke Research Network.
In his national role Derek has supported a mystery shopper’ campaign with people checking if hospitals are telling patients about research opportunities.
Rosie works with INVOLVE and feels it has been very important in promoting and supporting patient involvement in research.
* A systematic review is a compilation of all the high quality research on a particular topic. It may include a ‘meta-analysis’, which involves collating the data from all the studies and conducting statistical analyses on them.
For more information about how people learn about opportunities for involvement see also ‘Path to involvement – how did people find out about it?‘ and ‘Raising awareness of opportunities for involvement and finding new volunteers‘.