We asked Mhairi Aitken, from The Farr Institute’s Scotland Centre, her for tips on public engagement.
What do you do?
I’m a Research Fellow in The Farr Institute’s Scotland public engagement team.
Give me a flavour of the public engagement you do?
We use a range of different approaches which are aimed at raising awareness, generating discussions and identifying public preferences or concerns. We do this through deliberative workshops and public panels as well as quantitative surveys.
Recently, I’ve ran a series of deliberative public workshops exploring ideas relating to public benefits from data linkage research. Ipsos Mori helped us to recruit participants so that they were broadly representative of the public. To spark discussion, we used short video clips of researchers who introduced their studies and made claims to the anticipated public benefits of their research. People really engaged with this and the discussions were very sophisticated. I found it interesting there weren’t more questions around linking datasets. Many participants assumed this happened already. We purposefully talked a lot about how data was safeguarded. It really helped to be open and honest, acknowledging not everything was perfect. The participants really appreciated that.
Alongside our academic papers, we also publish 'plain English' summaries. For example our infographic summarising our systematic review of how the public feel about the sharing and linking of health data for research.
Along with colleagues in the other Farr Institute public engagement teams, we held an international consensus workshop to bring together best practice in public engagement relating to health informatics research. It was designed to inform strategy for best practice and I’m looking forward to the statement coming out soon.
As well as the academic side, I also get out to do public performances.
I hear you’re a regular at the Edinburgh Fringe?
Yes! I’ve done a number of performances at the Fringe discussing research use of health data. They’re intended to be fairly light-hearted and a bit provocative but are great for introducing ideas to the public of how data is collected and used. The shows also work well for generating discussion. You can watch my sketches from 2014 on I know what you ate last summer, and 2016 on Hands off my club card. I was there again this year with Dr Google will see you now.
I’ve also tried my hand at stand-up comedy which was a lot of fun and something I may do more of in the future.
Do you have any favourite highlights?
Too many! I feel very fortunate to do the job that I do.
The deliberative workshops we run are always extremely rewarding. We aim to have people there who have never thought about these subjects before. It’s always great to see people go through the process from being often a little apprehensive or unsure if they have much to say at the beginning to becoming really interested in the subject, and also becoming more confident to participate in the process and articulate their views. Often we find that people want to stay in contact and take part in more engagement activities.
What’s your golden rule for talking about patient data with the public?
Be open and honest. Don’t try to predict what people want to know or what questions they might ask but instead be open to take the conversations in whichever direction people are most interested in.
In conversation with...Mary Tully on how citizen's juries made her work trustworthy.