Today two articles have appeared on care.data, with are worthy of a few comments.
Firstly, George Freeman MP writes in the Telegraph:
“We must do everything to ensure a robust regime that will protect data from hacking and from any potential misuse. But at the same time, we must not block life-saving advances.”
As we have repeatedly pointed out, the Data Protection Regime is woefully inadequate and those who committ a criminal offence under Section 55 of the DPA cannot be sent to prison, merely fined. Mr Freeman does not suggest this should change, as we have repeatedly called for.
Equally, Mr Freeman writes: “we need to move health from being something done to you by government to something citizens take responsibility for themselves”
Interestingly, Mr Freeman also has his own legislation on this topic – the Patient Data Bill. The first two principles the bill states are:
(2) The Ownership Principle is that patients own their medical data.
(3) The Control Principle is that patients have the right to access their medical data and to control its use (including the right to share it for research or other purposes).
Yet care.data does neither of those things – quite the opposite. If you believe in people controlling their records, pulling them into a central database purely on the back of a junk mailing is hardly making patient ownership and control a reality.
Secondly, The Times reports that ‘patient records will be safer on database than in GP surgery’ according to Sir Simon Wessely, Professor of Psychological Medicine at King’s College London. Aside from how psychological medicine has anything to do with cyber security or database projects, he goes on to say ““It will be bigger in this central database, but I imagine it would be safer. Now you’ve got laptops and files lying about in GP surgeries.”
Firstly, we don’t think the way to address problems in GPs surgeries is to add another level of risk ontop. Secondly, this ignores the NHS’ track record when it comes to big IT projects. Thirdly, it somehow assumes a central database will not be a greater target, the ‘honeypot’ effect argument that was also a key reason behind the ID Card project being scrapped.
Chaand Nagpaul, chairman of the BMA’s GP committee, said: “GPs are telling us that large numbers of their patients have not received any information, while others remain worried about who will have access to it and what it will be used for.” Neither of these articles propose any kind of remedy to this fundamental failing by NHS England.
Fundamentally, if the benefits of this system are so great that it compels people to write these kinds of articles, filled with platitudes and lambasting opponents as ‘paranoid’, then it should not have been a challenge to get people to opt-in to the system. As Chaand Nagpaul, chairman of the BMA’s GP committee, said: “GPs are telling us that large numbers of their patients have not received any information, while others remain worried about who will have access to it and what it will be used for.”
NHS England has failed to properly inform patients and with even GPs still raising questions about what will happen to the information, there is no doubt that this scheme should be delayed.