We asked people how they first got involved in research. The most common route was through having a particular illness or condition. Some learnt about involvement opportunities directly from staff caring for them. Some were inspired by taking part in medical research as a participant and then wanting to get more involved. Some took up other types of involvement first (such as helping to run a support group or advising NHS trusts on service improvement) and then moved into research. Medical charities and support groups can also provide a direct route to research involvement.
Learning about and improving the evidence for vitiligo treatments was a key motivation for Maxine. She got involved through the Eczema Society and NICE (National Institute for Health and Care Excellence).
Fenella got involved in research through her consultant psychiatrist’s research activities. She has felt welcomed and valued.
Marney found out research involvement was an option through volunteering at her local trust.
Helena took part in several research projects about her condition, and kept feeling the study design didn’t reflect patient concerns. This led to her own research and research involvement.
Not everyone has been a patient or service user themselves. Some are simply members of the public and another common route to research involvement is having a family member who has been ill. Again, some people got involved in research first, while others came through other types of involvement.
Both Dave A’s parents had cancer. A local friend told him about a research conference run by patients and he went along.
Kath first got involved through the hospice where her son died. Initially face-to-face involvement was hard. Reviewing grant applications was better because it was less emotional.
Learning about research involvement through ‘chance’, ‘luck’, ‘coincidence’ or ‘accident’ was a very common experience. But people told us once they had got involved they were often invited to do other things. As Ben (a healthy volunteer) said, ‘It was a chance encounter and it opened a door, and the floodgates were opened.’ A few people had worked in healthcare, or had a partner or friend who did, and were more aware of health research. In some cases they might also be a patient or carer (such as Margaret, who had worked in radiotherapy and then got cancer, or Beryl, a former healthcare manager whose daughter had cancer and she herself was later diagnosed with it too). Rosie had been training as a psychotherapist before she developed mental health problems.
Ben met a research nurse at a children’s party and got invited to take part in research as a healthy volunteer. That was how his involvement started.
Rosie volunteered at a local support group to help her own recovery. It was chance that she got involved in research through the group.
Rosie approached the support group herself; others were approached and personally invited. Some also went through a more formal selection process, responding to an advert, perhaps sending in a CV and/or being interviewed.
Richard was invited personally to get involved because researchers read a diary he wrote about having cancer and being in a clinical trial
Catherine saw an advert for patient and public members of a research panel. There was a formal application and interview process.
Chance contacts and personal approaches can work well, but there was a general concern that we need to publicise opportunities to a wider group of people and make recruitment more open and transparent. Otherwise, control over who gets involved or is excluded remains in the researchers’ hands. (See also ‘Raising awareness of opportunities for involvement and finding new volunteers‘ and ‘Difficulties and barriers to involvement‘).