Original URL: http://www.theregister.co.uk/2014/05/08/care_bill_amendments_for_statutory_oversight_on_data_handling_rejected_by_government_peers/

NHS patient data storm: Govt lords SLAP DOWN privacy protections

Labour reckons GP records' slurp is a 'dead duck' anyway

By Kelly Fiveash

Posted in Government, 8th May 2014 12:45 GMT

Vital safeguards for protecting patients' privacy when NHS England records are shared with companies were scrapped by peers on Wednesday night.

A proposed tweak to the Care Bill, tabled by Lord Owen, would have brought in independent statutory oversight to better protect the handling of patient information across the health service, following the care.data debacle.

But government peers tossed aside the concerns by dismissing the amendment during a House of Lords session scrutinising the draft law.

Lord Owen, an independent social democrat, told the House his suggested changes to the Care Bill were needed "to ease the current suspicion and distrust over the whole issue of medical data, patient data and hospital data".

The ex-neuroscientist peer added that medical files, if strongly protected against misuse, "could be crucial for this country’s future in the biological sciences and in pharmaceutical research". Indeed, the government's proposed care.data system is designed to pull Brits' GP-held files into a central NHS database, where the records can be "anonymised" and sold to private businesses, such as pharmaceutical giants.

People can opt-out of the slurp, but if everyone did so over privacy fears then the system would be worthless to the government's customers, as Lord Owen noted last night:

If the issue is handled properly and with confidence, I believe that we can ensure that the number of those opting out – which is a natural right – will be very small. As long as the number of those opting out remains small then the data will be statistically significant and extremely important.

The danger is that the number of those opting out could become quite substantial. I hope and pray that that does not happen. In our vote tonight, we will at least be showing those who are concerned that we believe that there should be a statutory underpinning.

But 259 (mostly government) peers voted against, while 165 backed the amendment.

Click if you really want to watch the three-and-a-half-hour House of Lords debate on the Care Bill amendments from last night

A second proposed change to the Care Bill limiting secondary use of patient data to the provision of care and "biomedical and health research", tabled by Lord Turnberg, was also rejected last night.

Lord Howe, the minister responsible for quality at the Department of Health, agreed earlier in the debate that there might be merit in establishing an oversight panel in law whose advice and recommendations on data sharing would carry legal weight.

But he went on to unpick why, in the government's view, such a move was a waste of time.

Fast-food floggers and tobacco giants accessing medical data

Lord Howe argued that existing powers could be used to create an independent committee to advise on data-sharing. He told the House of Lords last night:

I understand the concerns raised by some noble Lords that government amendment 45 would allow commercial companies – including fast food and tobacco companies, for example – to access information under this provision for commercial gain. I hope I can offer reassurance that the scope of this provision will enable us to tap the potential of the wealth of data available for research, while explicitly preventing the use of such data for purposes that will not promote health.

However, let me be clear ... that the permitted purposes for general dissemination of anonymised and certain other information, as defined by government amendment 45, would not allow information to be shared for purposes that have no provision of healthcare or adult social care or health promotion aspect, such as to enable insurance companies to raise their premiums.

Lord Howe said that, within the next few months, the Tory-led coalition government will be discussing "regulations that would not only strengthen the rules around the use of pseudonymised data but create new safeguards around information sharing for commissioners, requiring pseudonymised data to be processed in 'accredited safe havens' and clarifying the rules on when information about people in care, particularly the most vulnerable, must be shared."

Among other things, peers in favour of stronger legal controls over the handling of patient information under the Care Bill had wanted clarity on what data the Health and Social Care Information Centre will release through the care.data programme.

Privacy campaigner Phil Booth of MedConfidential expressed utter disappointment with the government for failing to respond adequately to legitimate concerns that had been raised about the entire care.data scheme:

Rather than legislating to restore public confidence, the government has opened a loophole a mile wide through which to keep selling NHS patient data. It doesn’t matter how ‘sympathetic’ ministers are to public concerns.

The fact is the government has ducked the only sort of independent scrutiny that might help convince both patients and professionals to trust or have confidence in what it and its arms-length bodies want to do with the medical records of every man, woman and child in the country.

Late last month, NHS England admitted it needed to slow down its grand GP records grab after it had already paused the programme for six months in February for failing to properly explain to patients what it planned to do with their medical information.

Meanwhile, the Labour Party now appears to be responding negatively to the care.data scheme – perhaps after recognising that it's not a terribly popular plan among voters.

"My own view is that this is a dead duck," said Labour peer Lord Hunt on Wednesday.

"The government will not be in a position to enable the scheme to go ahead any time before the election because so much public confidence has been lost," he bluntly noted. ®