Lead: opening up clinical health data – who benefits?

Tim Davies analyses the announcement to open up more government data and raises concern over its motivations and implications:

“The first measures in the Cabinet Office’s paper are explicitly not about open data as public data, but are about the restricted sharing of personal medical records with life-science research firms – with the intent of developing this sector of the economy. With a small nod to “identifying specified datasets for open publication and linkage”, the proposals are more centrally concerned with supporting the development of a Clinical Practice Research Datalink (CPRD) which will contain interlinked ‘unidentifiable, individual level’ health records, by which I interpret the ability to identify a particular individual with some set of data points recorded on them in primary and secondary care data, without the identity of the person being revealed.

“The place of this in open data measures raises a number of questions, such as whether the right constituencies have been consulted on these measures and why such a significant shift in how the NHS may be handing citizens personal data is included in proposals unlikely to be heavily scrutinised by patient groups? In the past, open data policies have been very clear that ‘personal data’ is out of scope – and the confusion here raises risks to public confidence in the open data agenda. Leaving this issue aside for the moment, we also need to critically explore the evidence that the release of detailed health data will “reinforce the UK’s position as a global centre for research and analytics and boost UK life sciences”. In theory, if life science data is released digitally and online, then the firms that can exploit it are not only UK firms – but the return on the release of UK citizens personal data could be gained anywhere in the world where the research skills to work with it exist.”

An interesting analysis – can you add more?

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>