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Event Review: Health data - better care or privacy nightmare?

11 April 2016
Appeared in BioNews 846

Health data: better care or privacy nightmare? Unequivocally the former for Professor Liam Smeeth, GP and epidemiologist at the London School of Hygiene and Tropical Medicine, and Peter Knight, the deputy director of research information and intelligence at the department of health.

In their opening salvos at this British Library debate, both Smeeth and Knight championed the view that, as long as appropriate safeguards are in place, health data could and would improve care without endangering privacy.

To support his case, Smeeth told of how anonymised confidential data had helped to restore public faith in the MMR, measles, mumps and rubella, vaccine. The big epidemiological studies demonstrating MMR's safety could never have been performed had individual consent been required from every person whose anonymised data was used, Smeeth said.  

Knight echoed Smeeth's view and highlighted the importance of data to provision of public health services. He asked a pop quiz question: how many patients are treated by the NHS in 36 hours? The answer (around a million patients) forced the audience to consider the magnitude of the untapped research resource that the UK was sitting on.

Sam Smith, coordinator of privacy pressure group MedConfidential, was the first to offer a contrary opinion. For him, the risk from big data in healthcare is not that clinicians will misuse it, but that government agencies would. However, while worries over government access to confidential data surfaced at several times during the debate, the ethics and consequences of the commercial use of data were barely touched on.

But big data is a big topic, and during the audience Q&A section it became apparent that no one topic would be investigated in the depth it deserved. At the same time, many discussion points strayed from health data-related issues and moved into the debate around big data more generally.

Indeed, the final question from the audience was whether health data should be considered separately from that wider debate. For Smeeth, all personal and sensitive data raised similar issues and should be considered together. I would have liked to have heard this issue debated in greater depth.

All of the panellists were broadly of the view that use of digitised health data promised potential benefits but that these should be measured against the risks to security and privacy. Each panellist just had a slightly different view of where the risk/benefit line lay.

Even the provocative question 'do we have a moral obligation to share health data?' failed to spark the impassioned debate I'd hoped for. The panellists were mostly conservative and non-committal in their answers. The closest thing to an expression of individual opinion came from Smeeth, who said that there may be a moral obligation but there should not be a legal one. Instead, we should look to adopt the sharing of health data as a cultural norm, as we do with education data.

Overall, the discussion stayed too safe. It gave an informative overview of some of the issues raised by the collection of health data but without exploring any in real detail. The panellists came equipped with relevant case studies and analogies to demonstrate their opinions, but did not challenge each other or the audience as much as they could have. This was proven at the end of the talk when the chair, Sharmila Nebhrajani of the Human Tissue Authority and the Medical Research Council, asked who in the audience had changed their views on health data and its use. The answer: no one.

25 April 2016 - by Dr Barbara Prainsack 
A recent Wellcome Trust report says the public are worried about the 'one-way mirror', which allows companies full access to health data while the public know little about what they are doing with it and whom they're sharing it with...
28 September 2015 - by Sarah Pritchard 
Genomics England has produced a short animated film to explain exactly what happens to the data it is collecting as part of the 100,000 Genomes Project. After watching it, I feel that I know exactly where my data would go if I was to take part in the project, and that they would be guarded like the crown jewels...
11 May 2015 - by Dr Charlotte Warren-Gash 
International scientists from the Genotype-Tissue Expression project have created a new database to study how genomic variants affect gene activity in different body tissues...
18 November 2014 - by Chris Baldacci 
Google has announced that it will offer storage and analysis of genome sequencing data...
3 March 2014 - by Karen Birmingham 
The eight professors, including two Knights, who contributed to this event, were given a relatively easy time by the public, possibly because there was little time for questions or perhaps because the case for mass genotyping projects had been convincing...
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