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The government must pass three crucial amendments on care.data if it wants to restore trust and protect genuine health research and planning, write Professor Allyson Pollock and Peter Roderick in the Lancet today. As the Care Bill returns to the House of Lords for debate next week, the authors argue the governments concessions do not go nearly far enough, particularly on the sharing of data with commercial interests.
Pollock, a public health professor and leading voice in the care.data debate, and Roderick, an academic and barrister, explain how at one level, care.data simply allows coded patient data to be matched with identifiers from GP practices, for sharing across the health and social care system.
The problem is, they suggest, that in recent years, substantial changes have been made to the ways in which patient data are collected, monitored and particularly sold to private companies.
In particular, the 2012 Health & Social Care Act “entitles private companies to request the HSISC [Health and Social Care Information Centre] to establish a system for the collection and analysis of patient information for their activities”. This information, the Information Centre “must publish, subject to exceptions. Requests by a company can be made without reference to ‘medical purposes’ or public health benefit”, they write.
In February this year public trust in data collection and protection plunged to an all-time low following revelations that patient data was being sold to the commercial sector by the government’s Health and Social Care Information Centre without sufficient oversight.
Pollock and Roderick also highlight the signing of a Memorandum of Understanding in in January this year by the Secretary of State for Health for England and his US counterpart in which the politicians agree to “priming their respective markets for innovative new Health IT products and services”.
“Making patient information available to the private sector is likely to erode public trust and might lead many patients to opt out of providing information to GPs so that datasets would become unrepresentative and unreliable,” write Pollock and Roderick.
As a result of the Health and Social Care Act 2012 the Secretary of State has powers (which he has not yet used) to ‘accredit’ private companies as so called ‘safe havens’ for patient data.
As Pollock and Roderick point out, substantial difficulties in shielding confidential data from commercial exploitation arise because “commercial contracts are now at the heart of NHS commissioning”. Commissioning Support Units - who are soon to be at least semi-privatised - have already been given s251 notices, they write.
To address concerns and ensure data is available for genuinely medical and public health purposes, the authors have drafted three amendments which they are urging the Lords to adopt:
“To keep confidential patient data in the public sector unless commercial organisations have express consent” and can demonstrate data are required for express medical purposes as set out in the law currently;
“To put the Caldicott Independent Oversight Panel on a statutory footing with a duty for its advice to be taken into account”, and
“To ensure independent or parliamentary oversight of directions to the Health and Social Care Information Centre and the accreditation scheme.”
"These amendments will stop commercial exploitation of patient data and ensure there is proper scrutiny of commercial companies’ activities but they are still not sufficient to ensure full transparency over data flows, particularly to and among private companies. Further discussion and legislation are needed over the next six months to put an information system in place that deserves public confidence."
It remains to be seen whether the Lords will adopt Pollock and Roderick’s amendments.
There have been highly technical arguments in the specialist press about the extent to which information would be ‘de-identified’, but the concerns remain principally unaddressed since Dame Fiona Caldicott, head of an independent review into information governance, concluded last year that:
“it is unlikely that the Information Centre will have the capacity to de-identify information that local commissioners want to extract from local providers”.
We are now a couple of months into the 6 month delay in implementation that the government announced following a campaign by the BMA, RCGP, and medConfidential amongst others.
New NHS boss Simon Stevens hinted at this week’s Health Select Committee that the ‘6 month pause’ might extend - maybe indefinitely - saying there was no point in having an “artificial timescale” and that this was not set in stone.
There is clearly a need for more than the fairly minimal concessions so far wrung from the government (seen here in a letter to Peers from Earl Howe last week). If the government does not give more ground, put patient interests above commercial ones and restore some parliamentary oversight and control over commercial use of our data, there are mounting doubts about whether care.data will ever see the light of day - leaving a gap that could be very damaging for public health.
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