Join Mhairi Aitken at 8.20pm, Sunday 6th August and at 1.50pm, Saturday 26 August at the New Town Theatre (Fringe venue 7) to discuss the role our personal data should play in medicine.
Tell us a bit about yourself
I am a Sociologist and a Research Fellow in the Usher Institute of Population Health Sciences and Informatics at the University of Edinburgh and work in the Public Engagement team of the U.K.-wide Farr Institute of Health Informatics Research.
How does your CoDI show fit in with your research?
In my research I explore public attitudes and preferences or concerns relating to the ways that data are used in health research. This mostly relates to data collected in the public sector such as through the N.H.S. or education system. Previously my work has focussed on the ways that this public sector data is used in health research, but as more and more data is collected and as there is increasing possibilities for the ways this data can be linked together and used there are new questions being raised.
I am now examining ethical and social considerations relating to NHS health data being linked up with data from the private sector (e.g. from online shopping, social media or supermarket loyalty cards) or to commercial organisations being involved in research which requires access to NHS health data. Such practices are increasingly common, but people don’t necessarily know about them and they don’t necessarily have public support. I am interested in the extent to which these practices bring benefits or harm to the public and whether members of public would support them.
Why is the topic ‘dangerous’?
The way health research is conducted is changing. Ground-breaking findings are often now discovered not in laboratories or hospitals, but, on computers. This research doesn’t require access to people’s organs or tissue samples but instead to their data. Data which comes from the NHS, education, welfare or other public sector bodies, and – potentially – from shopping or social media. When it comes to understanding patterns in health and illness, examining our data may be even more powerful than examining our bodies. Researchers can use this data to bring about public benefits, for example through examining patterns in health and illness or factors affecting wellbeing. But there are important questions regarding who owns this data, who decides how it can be used and what counts as a “public benefit”. Should our information be thought of as private and belonging to us? Or is it a public asset that should be shared and used in all our interests?
Different people have different ideas of what is acceptable: you can imagine that midwives might be interested to know if pregnant ladies post pictures of themselves smoking or drinking on Facebook; GPs advising parents of children at risk of obesity might be interested to see those parents’ supermarket loyalty card data to know what they are putting in their shopping baskets; a public health department might be interested in Google data on search terms to track patterns and trends and identify possible pandemics. A pharmaceutical company might like to use this information in a similar way but with different ends in mind… and what about letting Google have access to NHS records?
Who should be allowed access to your data and under what conditions?
Why is the topic important to you?
Data is becoming a currency and is transacted every time we shop, use online banking or post on social media. We leave data trails everywhere we go – but very few of us have any idea how these are used or what they reveal about who we are and the lives we live. This data can be used for very good purposes – such as health research – or for less worthy causes – such as direct marketing – but drawing the line between what is and is not ok is tricky and inevitably controversial. Given the increasing amounts of data being collected and the new ways that this information can be used, I believe it is really important people are more aware about this and understand what happens with the data they create.
This is also essential for making sure that where data is shared with different organisations or is used for different purposes this has public support. The recent controversy surrounding Care.Data in England showed very clearly that public support cannot be taken for granted.
This data relates to people’s lives, so it is vital that those people understand what is happening with this data and have a chance to express their views on this.
Describe your show in 3 words
Surprising – challenging – fun
Why should the unenlightened Fringe-goer attend your show? What will they learn?
The audience will learn about the data that is collected every time they go online, use their credit card or post on social media, but also when they visit their G.P., pay their taxes or claim benefits. They will hear about some of the amazing research that can be done by joining all this data together but will also be challenged to think about who should be allowed access to this data and for what purposes. The researchers we will discuss are not just academics in universities but also analysts in Google and Facebook. I hope the show will surprise people and challenge their ideas of health research and who conducts it.
Get your tickets here!: