There can be many reasons why people get involved in research. In this summary we look mainly at the personal benefits which people hoped for from involvement. Elsewhere we look at what might be called ‘altruistic’ reasons – wanting to help other people, improve research and make care better for future generations. In practice most people we talked to were motivated by a mixture of reasons which might change over time, but a few people such as Dave G said their original motivation was purely personal. These could include having something interesting to do, making sense of an illness experience or getting information about their health. For some people payment was also attractive.
Dave G got involved through his local hospital because he was bored and wanted something to do.
Richard was curious about research and was interested to know more about his own condition. But he also wanted to give something back.
Mary wanted to use her previous background in marketing to set up as a paid mental health user consultant.
Often people found out about research as a result of illness. Getting involved could be a way of helping their own recovery or making sense of what had happened to them or to a family member, turning a bad experience into something positive. For Roger A, this has been ‘enormously satisfying and very healing’ and given him hope.
After his wifes death from motor neurone disease, Roger A wanted to do something to make sense of a tragedy. Research seemed the obvious route.
After having cancer Dave X needed something to do and keep his mind active. He has enjoyed meeting new people and feeling hes making a difference.
Joining an Involving People panel was part of Neil’s plan to recover physically and mentally after his stroke.
Sometimes people had been unable to work because of illness or caring responsibilities and involvement offered a way of gaining confidence and experience. It could also offer something interesting for people to do with their skills in retirement.
Research involvement helped Kath find a new way of being’ and transformed her life after years of being a carer.
As a retired scientist Charles missed the intellectual contact. He was also interested to find out more about his wifes condition, and help others
Most people did not expect to get any direct health benefits for themselves or their families from their involvement, although they might hope to contribute to finding a cure or a new treatment in future. However, as Charles (above) notes, getting access to more information and knowledge of the latest research could be a motivation. For Francesco, both getting information about his health and earning some ‘pocket money’ were important.
Francesco got involved to find out more about heart disease. It was also a way to get some pocket money’ as he has no pension.
Most people we talked to had gained personal benefits from getting involved in research, some of which were expected and some unexpected. Carolyn suggested it was fine to benefit personally, adding, ‘I’d be suspicious of someone who said they didn’t.’ But several people argued that personal reasons alone were not enough, and suggested someone with a very strong personal agenda could be unsuitable for research involvement and might disrupt meetings.
Richard feels it’s important people are involved because they want to help research, rather than using it as an opportunity campaign.
At the same time, people recognised that feeling passionate about an issue could be valuable. As well as finding out more about her skin condition, vitiligo, Maxine was driven by the fact that ‘it’s so trivialised this disease in the UKThis is a common disease compared to skin cancer and lots of other diseases and somebody needs to do some research.’