Big Data and the NHS – The Care.data row


The British Medical Association (BMA) has called for a halt to the UK government’s controversial Care.data initiative, which aims to use patient data to enhance insights about long-term conditions and unhealthy national trends, until it has been better communicated to patients.

The Care.data scheme intends to gather information from patient records, drugs companies, insurers and third sector organisations and pool this into a new, centralised NHS patient records database. NHS England says this will improve insights into a range of health conditions and help clinicians develop better ways of diagnosis and treatment.

Assessing the risk of sharing patient data

Originally intended to start next month, the Care.data scheme involved GP surgeries compiling patients’ data from next month. Information about prescribed medicines, weight, blood pressure and a full medical history covering past illnesses would be taken and given to the NHS every month.

After a risk assessment found that hackers could identify patients, even after efforts to anonymise the data, NHS England now says the scheme will begin in the Autumn.

While the Health and Social Care Information Centre (HSCIC) maintains that patient identifiable data will be omitted, those opposed to the new initiate say that critical patient data will be compromised. Where pseudonyms are used, reverse engineering could link medical histories to the individuals they come from, with serious and potentially damaging consequences.

Patients will also be needing more time to understand the plans and be afforded the choice of opting out. This follows mounting criticm that NHS England has failed to adequately inform patients. While the NHS did agree to a leafleting campaign following pressure from the Information Commissioner’s Office, surveys show that only a third of households have received information.

To date there has been no national TV campaign or press conference to launch the initiative. While this may be put down to a squeeze in spending on public services, much scepticism surrounds the most controversial aspect of the Care.data project – the sharing of patient data with private companies.

Big data, healthcare and privacy

There have been more than two million “serious data breaches” of NHS patient records since 2011. Little wonder then that questions loom large over whether the NHS can make a success of the Care.data scheme, and its quest to become paperless by 2018.

Writing for Zdnet, Jo Best says the Care.data initiative is much too important to get wrong yet the NHS has so far struggled to keep up with the pace of technological change:

“The NHS is trapped between its paper past and its digital future, a rock and a hard place it can’t get out of.  UK patients’ notes have traditionally been kept on paper, which has the advantage of being lossless and less leaky than its digital counterpart.

“However, as my own and many others’ experience shows, the NHS’ addiction of paper has all the downsides of the format with none of its benefits. Before the NHS could ever hope to make the best use of the scads of data it has, it must render it all into digital form, securely, and easily accessible. The electronic patient record fiasco showed how difficult such a task would be, and that involved a small section of the data the NHS holds on its patients.”

She continues:

“And what of our right to change our minds? This too should be considered. Under the current scheme, if, having shared your data, you subsequently decide you’d prefer not to be included in the database, your record can’t be removed. Data-sharing should not be such a binary proposition: the data defines an individual, it should be up to them to decide whether, when or where it’s included in Care.data or not.”

Going forward NHS England will be looking to reclaim public trust in the scheme. So far suggestions about a better marketing drive via postal, televised and radio campaigns have been put forward. NHS England will also be looking to partner with reputable charities and patient groups to help explain the scheme to win support from the public.

But, as the BBC’s Nick Triggle notes, “the fear now inside the organisation – and among the many supporters of Care.data – is that the concept has become so tarnished that whatever is done now will be wrong.”

The furore about the scheme to date contains instructive lessons on how not to roll out a public sector technology project.

Join us at Whitehall Media for our 5th biannual Big Data conference on 19 June, 2014 at the Hotel Russell in central London where we will be discussing privacy, healthcare and big data alongside other exciting technology trends and innovations. For more details, visit: www.whitehallmedia.co.uk/bda. Later this year, we will be holding our prestigious 6th annual Public Sector ICT (PSEICT) conference on 11 November, 2014 where we will directly address deployment of technology and innovations across government and the public sector as a whole.