Private Data, Public Good?

30 Jul, 2013

We may be happy to give blood, donate our organs after death, or even take part in clinical trials. But how happy are we to give our personal information to researchers for the public good? This was the topic debated at the Wellcome Trust Spotlight event chaired by Timandra Harkness in July. Here she gives us an overview of the conversations.
The starting points for the debate were the results of some new focus group research commissioned by the Wellcome Trust Policy Department. The focus groups had a generally positive attitude to the potential benefits of sharing data, for patients themselves and for society. And their doubts were more sophisticated than merely worrying about information falling into malicious hands, or supposedly anonymous information being linked back to identifiable individuals.
Trust was a theme that kept emerging, especially in relation to the NHS.

Some of the worries expressed by the focus groups linked to wider worries about the changing role of the NHS. For example, focus group participants were alert to the possibility of research findings being used as part of future campaigns to change their behaviour for public health purposes, or even to profile them as belonging to a group and refuse them free treatment in the future. The idea that your supermarket loyalty card might tell your GP you’ve been buying pizza, and lead to a telling-off or even refusal of treatment, was one example given.
Discussion of the focus group results at the Spotlight event threw up questions under three broad themes: Control, Consequences and Contradictions.

Consequences

These included questions about whether health data need a greater (or lesser) level of control than other types of data, whether individuals wanted the option of different levels on control depending on what data was to be used for, and questions about regulation. The issue of who would responsible for mistakes and how easily could things be put right was also raised, alongside concerns that would-be regulators may have little expertise.
There were also questions about whether simplistic interpretations of results would influence policies and whether hypothesis-free research may be possible if data sets were linked.
Science fiction author Ken McLeod gave us a glimpse into one possible future, with a reading from his novel, Intrusion.
In the passage he chose, the central character, Hope, has a difficult meeting with her Health Visitor, who has access to information about Hope’s recent activities. Things like drinking alcohol, writing to a local politician, and meeting people who are already flagged on other databases might not seem incriminating in themselves. But, as the health visitor hints, taken together they can create suspicion that Hope is not a fit parent. A vivid imagining of the darker face of linked sets of data.
Lawyer David Allen Green opened wider discussion of the role and potential of data in society with a thought experiment: what crimes can you commit alone, in a room with no connection to the outside world by telephone or internet?
Several, as it turns out. David introduced two key concepts: Privacy and The Public, asserting that they’re not binary, but essential to each other. The discussion that followed was wide-ranging, including generational differences in attitudes to data, and the distinction between self-publication and publication by others of information that’s very personal and even potentially incriminating. One lively example was an app that lets cyclists record their routes and time their journeys, making the results public. Control stays with the rider who chooses to post the data, but the social consequences can be unforeseen – such as competitive riding becoming dangerous.
Finally, we attempted to suggest some future questions for public discussion.
Phil Booth of campaign group MedConfidential (but “not a privacy fundamentalist”) asked why the discussion of using existing data wasn’t more upfront, giving individuals more sophisticated options for consent, and also making a stronger case for the actual benefits to be gained.
Paul Wicks of Patients Like Me, a website on which patients and their families can choose to share medical details, was eloquent on the benefits to both patients and current research. But he also argued that privacy IS important, saying “privacy is the means by which we mitigate abuses of power”.
Alice Bell of the University of Sussex had some critical words about the tardiness in opening up this conversation with the public. Reminding us that the discussion needs much wider context, she suggested that we need a “revolutionary social contract” between the individual and the health commons, reflecting the changed sense of community since the NHS was founded after World War II.
Can we find useful parallels in the way organ donation, or giving blood, are talked about with the public? When should people be asked for consent, and do we need a ritual to mark the decision to share your private information for social good? Can more be done to actively involve people in ongoing research and let them share the results? And how do issues of trust connect with who benefits from research?
As we expected, and hoped, the day ended with new questions, rather than answers. The public debate is only beginning – feel free to join in by commenting on this blog.
You might find the Wellcome Trust Summary Report on Public Attitudes to Personal Data and Linking Personal Data useful reading, and if you are interested in the debate around ethics in the era of Big Data, Timandra Harkness is chairing an chairing an event in October 2013 as part of the Battle of Ideas Festival.