It has not been an easy week for the NHS, as the controversy around the Care.data scheme continues.

The pressure is mounting on the Government.  Not only has its Care.data project been postponed for the second time, but Google has now pulled out of discussions with the NHS. The Times reported last week that Google had been in ‘secret’ talks with the NHS over plans to display death rates, waiting times and other information in searches for NHS hospitals. The search engine giant then decided to give up on the idea during the media storm that was created around the project, “which sources said made ‘the atmosphere too toxic to proceed.”

Care.data is an NHS England project, which aims to store all GP patient data in a central database looked after by the Health and Social Care Information Centre (HSCIC). Once the system is live, organisations such as university research departments and potentially (although more controversially) insurers and drug companies will be able to apply to the HSCIC to obtain access to the database. The programme had been due to start this month, but many argue that the NHS’s decision to postpone the roll-out for six months – while concerns about the use of data and patients’ right to opt out are addressed – is a wise move.

The benefits of the service could be substantial. The information could potentially lead to significant new insights into patterns of health, and eventually to better treatment practices and more effective drug development.

So what’s the problem?

Perhaps the system isn’t inherently flawed; but is attracting undue criticism because it hasn’t been communicated properly.

According to the head of the Medical Research Council, Professor Sir John Savill, the government is struggling to talk about the benefits. He argues that most people would see it as a “no-brainer” if ministers explained the scheme appropriately. Sir John is defending government plans to link data from GP records with hospital databases to track how people respond to treatments. “It could turn the UK into the best clinical laboratory in the world and the benefit would be felt first in the UK. This could change the game in health research and health care,” he said.

There are of course concerns that people’s most sensitive personal information could be misused, hacked into, leaked, abused or sold for use by insurance companies. NHS England has continually asserted that they are aware of the risks, and maintain the service has been designed to protect patient privacy. They argue that for 25 years hospital statistics have not suffered a major breach of privacy.

In principle, there are two issues associated with this – the ease with which one might be able to use the ‘anonymised’ patient record to identify individuals and the right to opt out of the scheme. The NHS however says that opting out is easy and all you need to do is tell your GP. The catch is the opt-out is a once and only opportunity. Once Care.data is live, with your medical records included, there is no looking back. You cannot change your mind and withdraw your data, and if you approve of your children’s records being included, then when they are old enough to decide for themselves they will have no right to opt out.

Lessons to be learnt

The issue of communication was echoed at the conference I attended last Wednesday.  It was hosted by think tank Reform and the Shelford Group, an organisation of leading English university teaching hospitals within the NHS. Speakers included Dr Daniel Poulter MP, Shadow Health Secretary Rt Hon Andy Burnham MP and the senior leaders from the Shelford hospitals. During one of the panel discussions, Sir Jonathan Michael, Chief Executive of Oxford University Hospitals NHS Trust, made a pertinent point. He said “…sharing of data is real problem – a problem generated by the NHS. When you ask patients and talk to them and explain the advantages – for them as well as others – of sharing data, on the whole, most patients are supportive.”

The NHS may be able to turn this all around. What the public need is reassurance. They need to be able to trust the government on this. The only way this can be achieved is if is the benefits are clearly explained and more importantly, as Sir Jonathan said, if patients are asked and not told. The Health Secretary Jeremy Hunt thinks GPs should leverage the “trust” the public has in them to convince patients of the benefits of the Care.data programme.

Were PLMR to advise the NHS on this, we would suggest they move away from the “we know what we are doing, trust us” approach and move towards “please can we use your data, and this is why we want it”. At the end of the day, it is the public’s data.

If the government can accept this outlook, they have a good chance. Transparency is key.

Anokhi Madhavji
 is a Senior Account Executive at PLMR and works closely with the media on behalf of a variety of health and social care clients.

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