Care.data: what price will you pay for our NHS?

In a blog last October, I questioned whether a door drop was an adequate way to inform the public about NHS England’s plans to extract and share confidential patient information. Of concern was the fact that the flyer would end up unread in the bin, therefore not allowing the public to make an informed decision about whether to allow their records to be shared.

This week, my leaflet duly came through the letterbox together with a pile of junk mail and narrowly avoided the recycling bin! But having read the leaflet I don’t feel any better informed as the document, in true propaganda form, only stresses the programme’s benefits. This failure to address the potential, yet real, threat to patient privacy has led to privacy campaigners highlighting the risks and urging people to opt out.

Only last week, leading charities including Cancer Research UK, Diabetes UK and the British Heart Foundation added their voice to the debate by launching a campaign in the media to highlight the importance of allowing patient records to be accessed for the advancement of medical science.

However, it remains difficult for this added support from non-government bodies to tip the balance in favour of opting in. Public concern will not be eased by the fact that Julia Hippisley-Cox, a leading academic and government adviser on health privacy questioned the fact that pursuing a policy that opened up data to charities and companies without clearly spelling out privacy safeguards left serious unanswered questions about patient confidentiality.

Nor will it be eased by the admission by Mark Davies, Health and Social Care Information Centre (HSCIC) public assurance director, that there was a “small risk” certain patients could be “re-identified” because insurers, pharmaceutical groups and other health sector companies had their own medical data that could be matched against the “pseudonymised” records.

In response to the article, Dr Geraint Lewis, NHS England’s chief data officer issued a statement that “no data will be made available for the purposes of selling or administering any kind of insurance and that the NHS and the HSCIC never profit from providing data to outside organisations.”

It is no wonder that there is a growing sense of confusion as to what will happen to patient data and who will be able to access it and for what purpose, leaving patients with the following conundrum: helping science progress or safeguarding their privacy?

But Dr Lewis raises here another interesting point around how the NHS will not reap any financial rewards from selling the data.

The NHS is already struggling to remain free at the point of care, with proposals in place for patients to pay for A&E and GP visits to enable it to continue on its existing model. With a £30 billion funding gap by 2020, the NHS will need to find new revenue streams if it wants to continue offering free treatment at the point of care.

So why not allow companies to pay to access the anonymised or pseudonymised data and reinvest the money back into our health service reducing the financial burden it currently faces? Highlighting the potential possibility of an NHS that is paid for versus sharing their information with selected organisations could potentially be a way of convincing patients to share their data more proactively?

I personally would be happy for the NHS to sell my data if all privacy concerns had been properly addressed and if I was entitled to choose the type of organisations which can get access to it. To me that seems like a winning combination: making medical advances easier and generating revenues that can be reinvested in front line care.