Following UK government's U-turn on the deadline for grabbing GP patient data, under-fire Health Secretary Matt Hancock is launching a policy paper to convince the public of the benefits of sharing their medical data.
Under the headline "Data saves lives", the Department for Health and Social Care is publicising a raft of planned initiatives and apparent progress in the face of criticism over its handling of General Practice Data for Planning and Research (GPDPR) programme.
Dubbed the "biggest data grab in NHS history", the programme has bowed to pressure and put back plans to extract GP data on 55 million people in England to be held in a central repository. The GPDPR was due to launch on 1 July but following a backlash from GPs and privacy campaigners was postponed until 1 September.
Endorsing his new plan, Hancock said data had identified those who were most vulnerable to coronavirus.
"Data was essential to our day-to-day response. And it powered vital research that helped us discover new treatments that saved lives in communities across the world. Data made all the difference," he gushed.
"Putting this strategy into action will deliver better treatment for patients, better health results for people who need care and support, and better decision making, research, and support for our colleagues on the front line. It also sets out how we will support the developers and researchers who we've all seen have so much potential to transform health and care."
But there was no mention of the fact that those researchers might be outside the NHS or UK public sector, or that their main line of work might be market research for private health companies, as The Register showed earlier this year.
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The policy paper describes three main objectives. It wants to "build understanding on how data is used and the potential for data-driven innovation, improving transparency so the public has control over how we are using their data." Then it wants to "make appropriate data sharing the norm and not the exception across health." Lastly it says the government plans to "build the right foundations – technical, legal, regulatory – to make that possible."
There is lots of detail in the paper, some of which is being welcomed by med-informatic professionals. But there is also a sense of caution around Section 7 which describes plans to help "innovators… develop and deliver new solutions quickly and safely for the benefit of all citizens, staff and the system."
Some campaigners in data privacy have slated the proposals. The paper's plan to use secondary legislation to enable "the proportionate sharing of data including, where appropriate, personal information for the purposes of supporting the health and care system without breaching the common law duty of confidentiality" spooked medConfidential.
It asked: "Does this Government really believe it can use 'secondary legislation' to overturn the millennia-long trusted principle of doctor–patient confidentiality that lies at the very heart of healthcare?"
Phil Booth, coordinator of medConfidential, said: "Boris Johnson's Government says 'Data Saves Lives', but buried in the small print is a rather more dubious deal: 'If you want better care from your data, you must let us sell it'."
Speaking to BBC Radio 4's Today programme this morning, Foxglove director Cori Crider said there were elements of the plan that were positive. But out of the 91 pages only one paragraph mentions GP data, where the bulk of patients' medical history lies.
"Your GP data... is in many ways the plum prize of everything because it's a structured machine-readable set of everyone's health data. It's possibly the most valuable set of health data on the planet. That's potentially of immense value to the NHS... but it also stands to make people a huge amount of money," she said.
Giving medical professionals access to patient data is key to medical research but clearly the UK government has not learned any lessons from the mistakes of care.data - i.e transparency is paramount.
The previous opt out period under GPDPR was six weeks before the 1 July implementation date and the process was said to be too complex. NHS Digital has yet to confirm the new opt out date for the 1 September launch. ®