Trust, Consent and Opt-outs in the Re-use of Health Data: Where Next?

By Graeme Laurie

In June 2016, the National Data Guardian, Dame Fiona Caldicott, published her Review of Data Security, Consent and Opt-Outs in relation to patient confidential data. She did so at the request of the Secretary of State for Health who had asked for recommendations on new data security standards, methods for compliance testing, and a new consent or opt-out model for sharing patient data for care and other purposes, such as services commissioning and research.

Dame Fiona is best known for her six Caldicott Principles for protecting confidentiality first issued in 1997. A further report in 2013 added a seventh Principle – that the duty to share information can be as important as the duty to protect patient confidentiality – but it seems that the message has been not getting through. Furthermore, the fallout from the ill-conceived and poorly executed care.data initiative is widespread in England. Although the 2016 Review did not address this directly, it undoubtedly cast a pall over proceedings (see further: Safe data, safe care).

The Motley Coat of Data

By Leslie Stevens

As a lawyer I am accustomed to, but sceptical of, hard and fast categories – we know all too well that bright line rules and seemingly fixed categories raise more questions than they provide answers. In data protection several such categories exist: anonymous data and personal data, sensitive personal data and ordinary personal data, data controller and data processor and so forth. Given the current reform of data protection law in Europe, and the anticipated introduction of the General Data Protection Regulation circa 2016/2017, questions should be (and have been) raised as to the effectiveness of these categories as regulatory tools. The lines between anonymous data and personal data have been blurred – the ease with which data may be re-identified and the power of data linkage has revealed the fallacy that is truly ‘anonymous’ data. Ordinary personal data, once considered innocuous, when combined with any countless array of other data, are likely to reveal intimate details about people’s lives – far more sensitive than data protection law would recognise.

I can't seem to take this coat off!

By Nayha Sethi

Last month, the Mason Institute had the privilege of co-hosting a guest lecture by eminent Public Health Law Professor Larry Gostin, entitled ‘Imagining Global Health with Justice’. Professor Gostin discussed his latest book Global Health Law and considered the arguments made therein against the backdrop of the recent Ebola outbreak. This was the first opportunity that I had to listen to him speak and I am so glad that I went along, but I left encased in a motley coat of emotions that I just can’t seem to take off.

First, inspiration: the passion with which Professor Gostin spoke, the considerable progress that has already been made in improving global health and striving towards the UN Post-2015 Development Agenda. It was heartening to hear that so many individuals and institutions are dedicating themselves towards the achievement of global health with justice. Professor Gostin shared with us some very important ways in which we might do so. Then along came shame closely followed by guilt: as we were reminded of the inequalities within the world, the narrative of hardship and suffering, ‘the narrative of the poor’ that remains. The fact that we are focussing on ‘the wrong priority’ and the injustices of global disparities in health. The fact that the international community has failed the countries most affected by Ebola.