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Health Data: Fit or Failing?

Do we value our privacy more than new medical discoveries? A panel discussion answers questions on the potential benefits and associated risks of health data.

The average person will collect a terabyte of medical data in their life time. But what is that data actually worth? In monetary terms, if you tried to sell it, you would apparently fetch less than the cost of one song on iTunes. Health data, however, is extremely valuable in other ways: there is huge potential to use it to speed up diagnosis and prevent certain conditions, as well as to individualise care and assist in planning for population health.

The challenge is, a lot of health data arises from deeply personal conversations between people and their healthcare professionals. Do we value our privacy more than new medical discoveries? The British Library, in collaboration with the Alan Turing Institute hosted a panel discussion on 12 June to answer this and other questions around health data and the potential benefits and associated risks. The panellists tackling this topic were Luciano Floridi, Turing Faculty Fellow and Professor of Philosophy and Ethics of Information at the Oxford Internet Institute, Sabina Leonelli, Co-Director of the Exeter Centre for the Study of the Life Sciences, and Natalie Banner, Policy Adviser at Wellcome Trust.

Here are some of the other themes and questions raised during the discussion:

Privacy

If we want to play our role in society, we should be providing our data to help make the world a better place. Even so, people still tend to be extremely worried about privacy and their personal information, but do they need to be? Big corporations and academic researchers are not actually interested in any one single data point. The value to them is in millions of data points together. This may be reassuring to some, but even if people aren’t being personally identified by their data, their characteristics may result in them being grouped with other people. Which group people are put into on the other hand can be hugely important as it could result in discrimination and raises ethical questions around profiling and monitoring.

Another observation was whether people are disproportionately worried about the privacy of their electronic health record, yet have no issues with googling their symptoms before their GP visit and their diagnosis afterwards. That data is also easily trackable!

Sharing data and ownership

One of the challenges with sharing data is there often is not a lot of transparency on who will be using the data and for what. Studies by the Wellcome Trust have shown that providing people with more information on how their data will be used and what it will be used for tends to result in people being more supportive.

The question of ownership inevitably crops up in every discussion on data, but what does ownership actually mean when data can be so easily copied? Should the focus rather be on control or guardianship of data?

The panel agreed that a more nuanced understanding of health data is required to ensure there is a focus on the benefits along with honesty around the risks.

Patient Data

 

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