On the ninth day of CoDI I wondered what meant more to me, my clubcard or my DNA?
Mhairi Aitken: Hands Off My Clubcard… Just Take My DNA!
I am a research fellow at the University of Edinburgh and work in the Public Engagement stream of the Farr Institute for Health Informatics Research (http://www.farrinstitute.org/ ). This work involves talking to people about the ways that personal data is used in health research and exploring ethical and social aspects of this.
My background is in Sociology. I studied Sociology (BA Hons.) at the University of York, following this I did a Masters (MSc) in Environment and Development at the University of East Anglia. I undertook a PhD at Robert Gordon University (Aberdeen), which examined public participation in planning processes around renewable energy developments. I have worked at the University of Edinburgh since completing my PhD in 2008.
The way medical research is conducted is changing. Often ground-breaking findings are now discovered not in laboratories or hospitals but rather on computers. This research doesn’t require access to people’s organs or tissue samples but instead to their data. Data from medical records, social care records or – potentially – internet browsing history and banking transactions. When it comes to understanding patterns in health and illness, examining our data may be even more powerful than examining our bodies.
My research explores social and ethical dimensions of this new age of medical research. I am particularly interested in the implications of this for individuals’ privacy and autonomy. The latter raises questions about the extent to which individuals can be in control of their data. It also forces a reconsideration of how medical research is understood in wider society and calls attention to the need for greater public engagement in medical sciences.
Accessing or sharing individuals’ data is typically justified by references to the public interest. Potential risks to privacy are said to be balanced by potential gains in better understanding patterns in health and illness. Such gains can potentially lead to new treatments or improved health services. However – and as has been made all too apparent through the recent controversies surrounding Care.Data – this use of individuals’ data in health research can only be considered legitimate if it has public support. Therefore in my research I am exploring – and identifying – the limits of public acceptability.
Mhairi’s previous CODI show:
I took part in CODI 2014 and performed a show called “I Know What You Ate Last Summer” . A video of that show is on YouTube: https://www.youtube.com/watch?v=wY2_vnt-hJ0
It was also reviewed in BroadwayBaby and given 4 stars: http://www.broadwaybaby.com/shows/i-know-what-you-ate-last-summer/699353
Mhairi’s CODI 2016 show:
A bit of an intro for my show is on YouTube: https://www.youtube.com/watch?v=HHR9wzB_Q5o .
Medical research using donated tissues samples or genetic data is perhaps easier to understand – it is certainly more familiar – compared to medical research using data derived from health records, or social care records. But more and more medical research is being conducted using these forms of data.
There is also significant potential value for research to use data collected by private companies – such as through Tesco’s Clubcard.
In this show I will challenge audience members to think about what is more personal: their body or their data? And whether their Tesco Clubcard should be considered more private than their tissue samples.
Clubcards, Nectar cards, Boots Advantage cards etc. hold huge amounts of information about us. The data collected show when we shopped, where we shopped, what we bought, how often we buy particular things, what brands we buy, how healthily we eat, how much alcohol we consume.
It’s not just loyalty cards, with every purchase by credit card, or carried out online, information is stored and collected. And then there is the information we post on a voluntary basis – on Facebook, Twitter or other social networking sites. This information paints a picture of the people we are and the lives we lead.
This data which is already collected and stored about all of us could be very valuable in enabling health research.
For example, being able to see in what parts of the country people are eating more or less healthily or drinking more alcohol, could suggest ways of targeting healthy living campaigns or interventions. If we were also able to link the information from Tesco Clubcards; or online transactions with information collected in the NHS – for example about prescriptions or patterns of health illness – we could get a far richer understanding of how lifestyle and consumption habits are impacting on health outcomes.
Joining up individuals’ Clubcard data with the details from their NHS records (in anonymous form and on a mass scale) could enable us to study links between what foods people were buying and health outcomes. Potentially it might reveal unknown links between certain products and health effects. It could also be envisaged that this joining up of information could enable health care providers to identify individuals who are leading risky lifestyles or who are not complying with advice given by their doctor. On the one hand this might be useful to enable appropriate support to be put in place. On the other hand however, we might consider this to be an invasion of privacy and policing of personal lives.
The answer to the question of what is more personal, or more private – your body or your data – may at first seem commonsense; surely everyone would prioritise their body. But through this show I aim to highlight the very personal nature of data collected and that data can say more about an individual than their DNA.
Why Mhairi is taking part in CODI 2016:
Public engagement is central to my work – but I do it because I genuinely love it. I like to talk to different groups of people, to tell people about my research and hear what they think about this. I like being surprised and challenged by new perspectives. CODI is an opportunity for exactly that – I hope that audience members will raise unexpected questions or points that I hadn’t previously thought of. That might give me insights into areas to explore further or open up new perspectives on the subject.
Public engagement in this area is really important.
Computer power, amounts of data being collected and ease with which data-linkage can take place, are all increasing. For this reason, it is important to stop and think about what this all means. It is important to consider what the implications are for the people whose data is used – that’s all of us. We are all at some point or another a data-point in a dataset. Whilst researchers might only see dots and numbers those dots and numbers tell stories about each of us. And each and every one of us are included within those dots and numbers. Ultimately this is data about people’s lives.
Often people initially feel that this is a subject they don’t know anything about. That changes once they hear a little and they realize it is about everyone! Everyone’s data is being collected, shared, sold and used for a variety purposes. So I believe it is important that everyone knows about this. In my work I aim to facilitate public debate and dialogue around this subject. In addition I look to find ways of feeding back public opinions to policy-makers, researchers and decision-makers, in the institutions overseeing health informatics research. This enables public views and preferences to be taken into account. Ultimately this is important for ensuring that people’s data are only used in ways which are in the public interest.
What Mhair is most looking forward to about CODI 2016:
I look forward to hearing the audience’s responses to what I say. I have held quite a lot of public discussion events relating to this subject matter. You can never predict how people are going to respond or what they are going to say. There will always be an unexpected question or an unanticipated point of view. That’s exciting! And it has the potential to open up new areas of interest or point to important new research questions.
Mhairi’s show takes place on Friday 12th August, Stand in the Square (Venue 372), 3-4pm, £8 (£6)
Purchase tickets at: http://www.outstandingtickets.com/show/107/performance/1542/book-tickets