Elsewhere we discuss how enjoyable and rewarding research involvement can be, and how some people spend many years contributing to a range of projects. As a result they often felt they became more effective at doing it – but also wondered if they were losing the freshness of their perspective and becoming too familiar with research. This is an important tension in involvement, which generates some strong feelings on both sides of the debate. One way to overcome this is to find different ways for people to contribute over time (see also below).
In the beginning when people first got involved they often didn’t really know what to expect. Being in a room full of professionals, who expect you to speak up and give your opinion, could feel daunting. But people were aware they were bringing something to the table that the professionals didn’t have; their personal experience of illness or using the NHS. In addition, they might also bring other skills they had developed in other aspects of their life. Looking back, they were often surprised by what they’d achieved and were doing things they’d never dreamt they’d do.
Roger A is just an ordinary chap’ – but he is also an expert in caring for someone with motor neurone disease.
It never occurred to Dave A in the beginning that hed end up in the places hes been to.
Over time, people felt they developed a greater understanding of research and knowledge about health. They also gained new skills, from attending training, working with professionals and through their experience of various involvement activities. By being immersed in research in this way, people often began to use the same language researchers used, language they perhaps didn’t understand in the beginning. They felt they had to be careful not to become too much like the researchers and still able to think like patients.
Understanding research language means she can explain things to patients that she now takes for granted, but Maxine has to stop herself from using the jargon shes picked up.
Helena worries whether government investment in health research will continue; the plug could be pulled at any minute.
Dave G strongly feels training is essential. He disagrees that being well trained means you become too professional.
Helena thinks her research colleagues didn’t see her as naÃ¯ve enough’ to be a patient because she had a PhD. She feels that reveals a lot about power relations. Researchers can use their own patient experience but only if they’re honest about it.
You need to be challenging and assertive and stand up for your point of view when you feel dismissed.
Becoming ‘too expert’ in involvement to think about research from a patient’s point of view was a concern for some. They worried it meant their perspectives may not be fresh or that they would miss issues that patients with more recent experiences would notice. As Helen said, ‘I’m beginning to – this sounds silly – I’m beginning to feel over-qualified to be a lay person. I’m beginning to lose my lay perspective’. Dave X felt there was a point when people could become too expert, but he said, ‘I hope I don’t reach it’.
As she gets familiar with research Helen worries she starts to lose her ability to be the person on the bus who doesn’t know anything.
People can become professionalised and may stop being useful, but this doesn’t have to happen.
Dave X hopes to continue learning and being involved, but sometimes people lose perspective and need to stop.
To guard against this, one suggestion was to refresh committees regularly with new people, especially those with more recent illness experiences. But it was also argued that it’s more important to have the right person on the committee than a new person. Dave A was replaced after five years, but said, ‘I felt I still had something to contribute and had they not been able to replace me in a sensible way then I would have felt really aggrieved.’
Others, however, thought long-term involvement and gaining expertise made them more effective at contributing rather than less effective. Roger B argued that being involved for a long time and gaining new skills didn’t mean you had to lose your ‘own specific patientness’, especially if you keep links with other patients to keep your views relevant.
Freshening up committees with new members is always a good idea because people can become comfortable.
People should seek out others’ views and be as representative as they can but without losing their own specific patientness.
Peter never stops feeling like a patient but it comes in bursts. Staying in touch with current patients or getting involved in a particular study helps remind you of the reality of illness.
One argument that is often heard around long-term involvement is that people become too ‘tame’ or ‘domesticated’ as Rosie called it. They become so familiar with research and researchers that they can no longer be critical and challenging. An alternative view is that the longer you are involved and the more skills and expertise you gain the better you are able to challenge. Tom had cancer twenty years ago and said, ‘In some situations you’ve probably got more to offer maybe because [you’ve] had all this time to reflect and think about things differently.’ It sometimes felt to people as if they couldn’t win; either researchers said they couldn’t be involved because they didn’t know enough about research, or they couldn’t be involved because they knew too much about research and were therefore no longer able to bring a really lay perspective (see also ‘Training and learning‘). Dave G felt the idea that he was a ‘professional patient’ was ‘an insult’. Helena, who had done a PhD in her condition, felt frustrated that research colleagues now dismissed her as not ‘na‚àö√òve’ enough to bring a patient view. Catherine argued that she could never cross the line and be on the same side as professionals. Like others, she felt she was unable (and unwilling) to forget important life-changing moments from her past experiences.
In spite of Catherines skills and experience, she will never be on the same side as the professionals. She brings a carer’s view.
Rosie still has bipolar disorder but hasn’t used services for 8 years. She feels shes in a better place to advise on some aspects of suicide research than someone who is at active risk.
Dave G doesn’t feel like a professional patient, but his experience means hes a more informed citizen researcher.
The thought of no longer being able to be involved because they had become ‘too expert’ saddened people. They felt strongly that there should be some way to keep people involved in the long term and benefit from the skills and experience they had gained, but perhaps move them into different roles rather than losing them altogether, which seemed wasteful. Dave A described this as the ‘conveyor belt of involvement’. This could be by taking on more national or strategic roles (for example national committee work, advising research councils and the National Institute for Health Research), mentoring new people and running training courses for both researchers and people starting out on involvement. But some people wanted to reduce the amount of time they spent in research, which would lead to opportunities for others to get involved.
It’s important to remember why you got involved in the first place Janice said shed be sad if she had to stop being involved.
People can stay involved by taking on different roles. The beauty of involvement is that there are other opportunities.
Mentoring new people would be a good way to remain involved, although Sharon thinks her experience will always be relevant as her daughter’s condition will never be cured.
Neil is becoming more selective about involvement. He thinks opportunities should be rationed.
Changing roles over time were a common experience for people who had been involved longer term. Roger B said his role was more strategic now than when he started. Kath initially reviewed funding proposals, but then began to do some community outreach work to train people in understanding research methods. Being involved for a long time led to new career opportunities for some people. Kath and Rosie were doing PhDs in involvement, and Helen had begun to work in patient and public involvement and engagement. But, as Kath pointed out, people don’t have to develop careers or even commit a great deal of time to research. They can dip in and out of it as they choose. Helena, who had already completed a PhD in her condition, pointed out that sometimes the research world is not sure how to treat user-researchers. Straddling different worlds sometimes felt quite powerful but could also feel very uncomfortable.