When I first became a health researcher, I felt that people would see taking part in research as a bother, a pain, or a waste of their time and that, by association, they would see me as akin to a nuisance caller, intent on coercing them into some unwanted activity. Thankfully, after 10 years doing research, it’s become apparent to me that this is far from the truth.
For a start, the tentativeness with which most of the researchers I know proceed as they recruit participants is anything but a hard-sell. In fact, due to necessarily stringent ethics and governance processes and practices, strict eligibility criteria, and a healthy dose of ‘only wanting to do what’s best for people’, we are possibly more in danger of being talked out of taking part in research than of being talked in!
So, how many people actually take part in health research in the UK? At least part of that answer is provided by the National Institute for Health Research, who reported 665,000 participants in the clinical health studies they funded during 2016/17. That seems like good news, and is encouraging, particularly as these are statistics from just one funder, albeit a large one.
My research interest is domestic violence and health and, as you might imagine, with that come particular challenges around asking people to take part. Will their safety be compromised? How do we ensure anonymity? And, particularly for qualitative interviews, how will people find talking about difficult, sensitive, and potentially distressing topics?
Curious about what it meant to people to take part in research I’ve conducted, and what their motivation had been, I asked them. What I discovered, was that most people were motivated, at least in part, by feeling that they had something to contribute, an experience to share:
I wanted to take part because of personal experience which is quite live at the moment, so there was no shadow of a doubt that I would be willing to take part
to inform future research
I thought, “Ooo, yes that sounds really interesting.” Interesting because of the subject matter, because of the story that I’ve got to tell, but also because I’m always keen to support research endeavour and it was something that I felt I could contribute to
I feel I have a story to tell, and if one person gains any bit of information or knowledge that helps them then I feel I’ve done something
Some people felt, in particular, that involvement in any type of research to which they could contribute was a sort of altruistic responsibility; that the potential gains for others outweighed any inconvenience or upset that they might experience by participation:
I feel quite strongly that I would happily take part in any research to do with domestic abuse …
Maybe something I say might be useful in some way for somebody else, you know
It’s an area I’m very interested in, and have experience myself, and have friends with experience, so I feel it’s really important that people who have knowledge come forward and share it
I think for me, any opportunity to contribute to research, why not, you know?
And of course, part of this was hoping for change in the future, so that others might not have to experience the same situations and challenges that they had:
Basically I could see that if somebody is doing a research there’s going to be something that’s going to go out there to help, you know, I want to be able to help make a difference
… I consider myself resourceful, perhaps others aren’t and I hope the benefits of your study is for the wider group, those who perhaps aren’t quite so resourceful
Also mentioned were the actual gains to individuals, particularly the acknowledgement and validation of their situation, their experiences, and the challenges they were facing. This was seen both as part of the research process (for example, as a result of researcher responses during the interviews), but also simply as a function of someone out there in the world deciding that this was an important enough topic to want to research:
For me, it’s crucial that this research is done because, to my knowledge, there’s nothing out there that talks enough about it to say that it’s a pertinent issue.
Because I’ve been finding the whole situation pretty stressful, I was quite interested that somebody was looking at it
I’m fully supportive of what you are doing because it’s been, what, seven years now, and this is the first time somebody said, “How are you?” to me … thank you
Anything I can do to help raise awareness and to support people … And, you know,
I’m glad someone’s doing research on it
So am I worried now, about asking people to take part in research? I think I’ll always be cautious on their behalf, that’s probably just my nature, but my beliefs have shifted, and now that I see how willing and motivated people are to take part, and the value they place on both the research experience, and the potential outcomes from the research, I might worry just a bit less.
Public involvement and engagement at the Centre for Academic Primary Care (CAPC).