How to make a healthcare data sharing controversy worse

Profile picture for user slauchlan By Stuart Lauchlan February 25, 2014
Summary:
You’ve got to hand it to the UK government. If there was one way to make its plans to build a hugely controversial database of patients data even more controversial it would to be hand the contract to build it to outsourcing giant Atos.

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You’ve got to hand it to the UK government. If there was one way to make its plans to build a hugely controversial database of patients data even more controversial it would to be hand the contract to build it to outsourcing giant Atos.

But yesterday it was confirmed that the French services house has indeed been given the task of accessing and sourcing personal data from medical records across the UK, even as it seeks to extricate itself from another flagship government contract.

The data extraction contract relates to the care.data program which we highlighted last week after its kick off was pushed back six months following an outcry from patients advocates, doctors and privacy campaigners who said the scheme had been poorly communicated and an opt-out clause not promoted sufficiently to the public.

Under the NHS scheme, data from local doctors records will be linked with information from hospitals to give an idea of what happens to patients at all stages. The data will include information on family history, vaccinations, referrals for treatment, diagnoses and information about prescriptions.  Personal confidential data (PCD) identifiers will also be taken, such as date of birth, postcode, NHS number and gender.

Atos is an inevitably controversial choice to pick up such a contract from the NHS as the firm has been severely criticised for its management of “fitness for work” tests on disabled benefit claimants for the Department for Work and Pensions (DWP).

Last week, it was revealed that Atos was chasing an early exit from its DWP contract in the face of persistent death threats to staff. The contract had been due to run until August 2015.

Atos handling of the assessments - which are used to gauge eligibility for employment and support allowance and incapacity benefit - had resulted in accusations that people are being wrongly recommended for work, or put through stressful medical interviews.

Georgina O’Toole of research firm Techmarketview makes the observation:

“When you ‘dance with the devil’ you can expect to get your feet trodden on, but it appears the pressure has become too much. Nonetheless Atos has committed to continuing with the contract until a new supplier (or suppliers) is able to take over.

“Atos has always been caught in the firing line. The company has, though, also been criticised for the quality of the assessments and reports. Indeed in 2012, the National Audit Office (NAO) criticised the Government for failing to penalise Atos for underperformance.

“Tellingly though, the same NAO report also highlighted that the DWP’s negotiating position had been undermined due to inaccurate forecasting of the number of people likely to need medical assessment. It seems likely that some of the ‘poor quality’ reporting was as a result of Atos trying to keep up with unexpected levels of demand.”

Bad diagnosis

Meanwhile the care.data data sharing scheme came under bad-tempered scrutiny yesterday by UK legislators in a session of the House of Commons Health Select Committee, following media reports that morning that back in 2012 hospital data was sold on to a society of actuaries which provide advice to insurance companies about how to “refine” their premiums.

Ministers and officials insist that such transactions cannot happen in the future because the rules have been tightened up since then.

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Jeremy Hunt

But the revelation by Max Jones, director of information and data services, for the Health and Social Care Information Centre, that Atos would be on the front line prompted more criticism from Commitee member, including Conservative MP Dr Sarah Wollaston who said:

“There are many sensitivities around Atos - it’s reasonable to see why the public might be concerned about that.”

It was Wollaston, who disclosed that in January 2012 the hospital admissions records of 47 million people – specifying treatments and diagnoses, ages, and areas the patients lived in – from 1989 to 2010 were handed over to the Institute and Faculty of Actuaries (IFoA) for £2,220.

A spokeswoman for the Health and Social Care Information Centre (HSCIC), which is now in charge of NHS data, said its predecessor body, the now defunct NHS Information Centre, was wrong to sell the information to the insurance industry:

"The HSCIC believes greater scrutiny should have been applied by our predecessor body prior to an instance where data was shared with an actuarial society.

"We would like to restate that full postcodes and dates of birth were not supplied as part of this data and that it was not used to analyse individual insurance premiums, but to analyse general variances in critical illness."

But the fact that the NHS Information Center has been replaced meant that Daniel Poulter from the Department of Health was able to state that while the department really wanted to help with more information on this incident:

"We'll be as helpful as we can, but the organisation in question doesn't exist any more."

Dr Chaand Nagpaul, chair of the BMA general practitioners committee, warned that the data sharing scheme would undermine trust between individuals and their family doctors:

“Patients visit their GP, they visit us and they entrust us with very personal, confidential information as part of their life-long record in general practice.

“At the heart of our concern as GPs is that if patients mistrust or are concerned about the security of their data, or have concerns about how this data will be used, that would actually potentially, irrevocably damage that fabric of trust when a patient walks into their GP surgery.

“That may actually have other consequences in the way the NHS records data, it may actually result in patient not attending their surgery at all, for fear or what may happen to their records. Or they might be inhibited in being totally open about some things.”

But for all that, the three main political parties in the UK unexpectedly joined forces to insist that the data.care programme should go ahead even amid recriminations on all sides about the form the programme should take.

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Andy Burnham

Health Secretary Jeremy Hunt said that while he remained utterly committed to the “data revolution”, the six month interregnum was appropriate as:

"NHS England was absolutely right to have a pause so that we ensure that we give people reassurance. This program is too important to get wrong,

"Of course we are having a difficult debate, but its purpose is to carry the public with us so that we can go on to make important scientific discoveries."

"We will continue to work hard to ensure that this important scheme goes ahead."

His political opponent Andy Burnham, health spokesman for the Labour party, threw him a lifeline by stating that his side of the House would support what he called “an important scheme that needs to be saved”, but with the proviso that some changes were made:

“If the government work with us to introduce a series of tough new safeguards to protect patients, we will work with the Secretary of State to help rescue this failing plan.

"Those safeguards include tougher penalties for the misuse of data, Secretary of State sign-off on any application to access data, full transparency on organisations granted access, and new opt-out arrangements by phone or online."

This one will run and run...

Verdict

Good politics - if you don’t want to answer a difficult question, rebrand and say the original responsible body doesn’t exist any more.

Elsewhere I see no reason to change my view from last week: this is a well-intentioned idea that’s being appallingly crassly handled.

And without making any comment on how Atos is likely to perform - for the simple reason that we just don’t know how it will do yet - in political terms, appointing that French firm can be seen as throwing petrol on the flames of an already out of control fire.

An unholy mess that needs to sorted out pretty sharpish if another delay isn’t needed in 6 months time.