Dr Mhairi Aitken, Research Fellow on Public Engagement for the Farr Institute, writes about how she brought a conversation about patient data to the Edinburgh Fringe.
August is an incredible month in Edinburgh with six festivals coinciding, including the Edinburgh International Festival, the Edinburgh Festival Fringe and the International Book Festival. You can find a show on pretty much every topic imaginable, and so, since my job involves finding new opportunities to hold public conversations about uses of data in health research, I did a show about that!
Dr Google will see you now
My show – Dr Google Will See You Now – was on Monday 6th August and was part of the Cabaret of Dangerous Ideas (CoDI) which is an initiative run by the Edinburgh Beltane for Public Engagement to get university researchers out of their comfort zones and in front of Fringe audiences to talk about their research.
I’ve taken part in CoDI each year since 2014 and it is always an amazing experience. It is quite unique as a way of engaging with very different audiences; these aren’t the audiences that come to science festivals or typical public engagement events. The audiences are mostly visitors to the festival looking for an unusual form of entertainment but open to learning something new at the same time. At CoDI shows half the time is reserved for audience questions, comments and discussion. You can never predict which way it will go and I find that really exciting. Audience members bring incredible insights and perspectives and ask questions that I never would have thought of. It’s amazing, and certainly helps me to think about my own research differently.
A valuable conversation
This year my show began by looking ahead to the year 2030 and presenting a vision of the future where Google are running the Google Health Service. It was deliberately provocative. In this vision of the future healthcare had become an almost entirely automated service with diagnoses and treatments decided by artificial intelligence and analytics. It was a vision of a highly efficient but largely un-human health service.
The discussion which followed was a mixture of hilarity and serious debate around the limits of acceptability concerning the ways that people’s data are used. This enabled discussion of the ways that data are currently used and of the governance mechanisms in place. It also led to discussions of the value of data for health research. Audience members had questions regarding how data is currently used and how decisions are made about who gets access for what purposes. There was interest in how greater use of patient data and innovation with artificial intelligence might benefit different groups in society. For many audience members the really important issue to consider was whether this would address or exacerbate existing health inequalities.
Audience members recognised both the incredible potential benefits of better use of patient data and innovation in artificial intelligence to increase understanding and relieve pressure on health services, but also the dangers present in unequal access to technologies or services and potential discriminatory outcomes of over-reliance on automated processes. Audience members enjoyed considering the extreme possibilities and debated whether in the future they would prefer to have an appointment with a human consultant or a specialised AI bot and there were some great audience exchanges between people with very differing views. The discussions were fun and spirited –which was certainly helped by having a professional comedian, Susan Morrison, as compere – but also got to grips with really challenging aspects of the subject.
By the end of the show many audience members were very keen to hear about how they could engage more with this subject and to know of opportunities to become involved in research or governance processes. I think that’s a great outcome!
I was also really excited that a BBC film crew came along to film the show and Nish Kumar was there in the audience! I’m looking forward to seeing some footage of the show included in Edinburgh Nights on BBC2 on Friday 24th August (and available on BBC iPlayer afterwards).
What I’ve learnt
Over the four years that I’ve been performing shows on this subject at the Fringe the level of interest has grown massively and it is clear that members of the public are enthusiastic for more engagement around these issues.
It is also clear that public conversations about patient data can grapple with the complexities and intricacies of the subject matter. When I compare the conversations I have with the audience at these shows with those that arise at deliberative workshops and other more formal public engagement activities I run it is interesting that while the style of the conversation is very different the discussions are no less nuanced or sophisticated. So I think there is real value in experimenting with unusual and creative approaches to engage different groups of the public in important discussions around patient data.
Performing in festivals, such as the Fringe, which are not focussed on health or science are really valuable opportunities to engage with members of the public who do not typically come to events on these topics. I think that is really important for expanding the reach of public engagement and facilitating conversations with diverse groups. I’m already looking forward to next year’s Fringe festival!
Find out more
Footage of my show is included in BBC 2 coverage of the Edinburgh Festivals
More information about the Cabaret of Dangerous Ideas
As well as my CoDI show I was a guest on a live recording of Ed Milliband and Geoff Lloyd’s podcast “Reasons to be Cheerful”, which was recorded in front of a live audience at the Fringe Festival. The podcast episode focusses on the ways that big data can benefit health and can be listened to here.