When we recruit people to health research, we spend a lot of time thinking about how to encourage participation. But we know far less about the people who decide not to take part, and the reasons behind their decisions.
This was the focus of Alcohol Research? No Thanks!, a British Academy-funded project I led with Dr Skaiste Linceviciute at the University of Southampton. Working as part of a wider team, including a team member with lived experience, we wanted to understand what puts people off taking part in alcohol-related research and what researchers might do differently.
Working with four charities, we heard from people with personal experiences of alcohol problems and recovery, as well as people affected by the drinking of family members.
One of the strongest findings was the role of stigma. Participants described feeling embarrassed or ashamed about discussing alcohol, and worried about how others might judge them. For some, even responding to a research invitation could feel like revealing something about themselves they would rather keep private.
"People quickly judge and label you. And so yeah, you know, it's the stigma behind an addiction."
"I don't like talking about alcohol because, you know, it's shameful and embarrassing about the whole addiction and alcohol thing. And it can bring back horrible memories, part of your life and those emotions that you don't actually want to remember."
"They fill these in [research questions] and they see no change happening, no difference, no outcomes or no feedback afterwards as to what was done with that data. So when people feel like they're not making a difference, it feels like a bit of a waste of their time."
Dr Steph Hughes and Dr Skaiste Linceviciute
Dr Skaiste Linceviciute and Dr Steph Hughes
Research in action
Others spoke about the emotional impact of revisiting difficult experiences. Some recognised they might have been willing to participate at another point in their lives, but weren't ready when approached.
We also heard frustration from people who had contributed to research before but never found out what happened afterwards. They questioned whether sharing their experiences had made any difference.
Interestingly, some people had never heard about opportunities to take part in alcohol research. This raises questions about where and how we recruit, particularly when we rely on familiar services and networks that may not reach everyone.
These findings have implications for how we approach research participation. The language we use, where we recruit, who introduces a study and how we communicate its purpose can all influence whether someone feels comfortable taking part.
We've brought these findings together in an evidence-informed practical guide for researchers, alongside a short film featuring participants' accounts. At a recent screening event, participants, researchers and other stakeholders came together to watch the film and discuss the findings. The conversations reinforced the importance of working with trusted community partners, making research accessible and considering how participation might feel from the perspective of those being invited.
Although our focus was alcohol research, many of these issues are relevant across health and care research. Listening to people who choose not to participate can help us think more carefully about whose experiences are represented in the evidence we produce, and what we might need to do differently.
Watch the film above.
Researcher Guide