Leonid Schneider on his blog said:Simon Wessely, professor of Psychological Medicine at the King’s College London, has forwarded me this important message on data sharing and patient privacy in UK:
“I sense that people are starting to wake up to the fact that open data/ data sharing is not as straight forward as it first seemed. In this country and elsewhere there is a complex legal framework around data sharing, and one that is also constantly changing in the light of two particular issues. The first is the fiasco of “care.data” [https://www.england.nhs.uk/ourwork/tsd/care-data/ -LS] in this country, and no doubt similar issues elsewhere, which means there has been a loss of confidence in our existing systems of data sharing and linkage, and increasingly people are wanting to have more say in what their personal data is used for. The second, not unrelated, is the increasing power of computer technology both to generate mammoth data sets, but also to permit re-identification of individuals which would hitherto not have been possible. Both of these developments mean that the old divisions between identifiable data (for which consent for sharing must be sought, unless there is specific case by case legal justification not to do so, a complex bureaucratic procedure) and anonymised or pseudo anonymised data, is being tested. There are even calls that consent is needed for sharing truly anonymised data, although that does seem to many, including myself, rather ridiculous. But such voices are definitely being listened to, following the ever increasing importance attached to autonomy, confidentiality, consent and choice by Courts and regulators alike.
What is clear is that the general atmosphere around data sharing, especially of sensitive data such as medical information, is in a state of flux. Indeed several reviews are ongoing in this country which are likely to make data linkage and sharing more onerous, and eventually there will be new legal rulings, which again are unlikely to produce a more liberal approach to data sharing/linkage.
Sooner or later I anticipate there will be a collision between the open data movement and the legal framework around data protection, at least in the UK. As an epidemiologically trained researcher I am anxious about the consequences of this, since I doubt very much it will make data sharing and linkage easier, rather the reverse. I hope I am wrong, but the fall out from care.data has been so toxic that I suspect the direction of travel will be in one direction only. At least in England”.
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