Somerset NHS datagrab – part 2 – now it IS national

Sometimes we get our timing wrong. We run stories and investigations both online and for our monthly newspaper. Each story we write, we have to judge where to place it, how time sensitive it is etc. Most importantly, will others get there first if we wait for the monthly paper!

Inevitably we sometimes call it wrong. And this is the case with a story we had ready to roll 2 weeks ago. It is a follow on piece from our article about Somerset NHS Trust selling your data to a listed plc. Now it seems the whole NHS is about to take your data and find other uses for it. With or without your permission. And we slated it for our 15 June hard copy. Unfortunately in between times just about everyone else has got in on the act. Not just the press.

Bridgwater and West Somerset MP Ian Liddell Grainger also raised the issue yesterday. He noted “NHS Digital, is designed to hold the medical details of more than 55 million patients. From there they will be made available to the private sector and other researchers. Department of Health officials say the move will reduce the burden on GP practices and create a valuable resource. And while the data will include details of patients’ physical, mental and sexual health it will be anonymised. But critics say that process could be reversed if the material falls into the wrong hands.

So we decided to publish our full article online now, and anyone who misses it can still read it in The Leveller® next week. the article below is written by James Garrett.

For Sale (Again); Your Health Records

Over recent months The Leveller® has reported regularly on concerns that the sale by Somerset NHS Trust of the records of 600,000 patients to a clinical research company could compromise the confidentiality of their medical histories.

In response, the Trust announced a U-turn, promising the records of all Somerset residents who signed up to the NHS national data opt-out (NDOO) would be excluded from the data passed to the firm, Sensyne plc.

Now Somerset’s NHS users face data privacy concerns on a greater scale. NHS Digital, which runs healthcare IT systems for the service across the UK, plans to load the medical histories of more than 55 million patients into a single national database. This would be available, at a price, to academics and commercial companies.

From 1 July all information held by GPs on their patients, including mental and sexual health records, is to be pooled on a central database. NHS Digital says, ” The data held in the GP medical records of patients is used every day to support health and care planning and research in England, helping to find better treatments and improve patient outcomes for everyone.  The new data collection reduces burden on GP practices, allowing doctors and other staff to focus on patient care.

Prof Martin Marshall, chair of the Royal College of General Practitioners (RCGP), said he supported the principle of sharing patient data for the purposes of healthcare planning and research. However, it was “critical that this is transparent and patients have trust in how the NHS and other bodies might use their information.”

However, the process is described less flatteringly by Dr Neil Bhatia, a Hampshire GP and information governance lead. According to him, “It’s the biggest data-grab in the history of the NHS.”

Dr Ellen Welch of the Doctors’ Association UK (DAUK) expressed concern the process would “erode the doctor-patient relationship, leaving patients reluctant to share their problems due to concerns about where their data will be shared.”

Her concern is backed up by research reported by the British Medical Association (BMA). This found 70% of respondents would not be happy for their data to be analysed by multinational ‘big tech’ companies. Only 13%, barely more than one in ten, thought they could be trusted to handle anonymised data.

Patients who wish to opt out of this process have until 23 June to do so. (See below for advice on how to do so.)

Privacy campaigners warn that the amount of information to be extracted from patient records “far exceeds” that under previous schemes. They claim GPs have not been given enough time to inform their patients about the changes. The last time the NHS planned such an exercise, back in 2014, every household in England received a leaflet about the plan for care.data, which was subsequently scrapped.

This time, GPs are not required to contact patients but will need to update privacy notices on their websites, says NHS Digital. It adds they may also wish “to include information about the change on social media, newsletters and other communications.”

Dave Orr from Taunton, a retired IT worker and campaigner for transparency and accountability in public services, said, “We are still in the middle of a pandemic – this is not the right time to be bringing in such a major change. If the Prime Minister can wait another year before he goes on honeymoon then so can the NHS.”

He added, “There also ought to be two types of opt-out but NHS Digital has gone for an ‘all or nothing’ approach.” He explained, “I should be able to agree to my medical data being used in medical research that will benefit me and everyone else but not also have to allow my records to be sold to some American private health firm which is driven solely by commercial principles.”

Mr Orr, from Taunton, pointed to NHS Digital’s anonymisation principles which, he claimed, were “full of wriggle room and not fit for purpose.”  They state, for instance, “Every organisation that provides health and care services will take every step to use data that cannot identify you whenever possible (our emphasis).”

He has written to all Somerset’s MPs, urging them to lobby Health Secretary Matt Hancock to delay the process. He said, “The clock is ticking. I hope you will be part of pausing the NHS Digital data extraction to allow more time for public engagement and consideration of the scheme.”

As The Leveller® went to press the BMA said it was making last-minute representations to NHS Digital “to ensure stronger arrangements are put in place over the security and intended uses of the data collected and to minimise the administrative burden for practices. We will continue to hold NHS Digital to account, ensuring there are appropriate safeguards in place as to how the data collected is used and that the views of our membership are represented in discussions about patient data.

Opting Out of the GPDPR:

Readers who wish to opt out of their GP pooling their patient records in the national database have until 23 June to register a Type 1 Opt-Out. This will prevent data being shared with NHS Digital. You can still register an opt-out at any time after this date, which will prevent any new data being shared with NHS Digital. Your individual care will not be affected if you opt-out.

For further information:

https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research#opting-out

One comment

  • I am commencing legal action against DIGITAL NHS.

    If you would like a copy of my letter before action, which is also gone to the Musgrave NHS trust and Sir Bruce Keogh at Sensyne please send me your e mail.

    Mine is cahillkj1944@gmail.com. I live in Exeter and am a former special advisor to members of the House of Lords on Surveillance 2010-2018

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