Big data and your medical records: Is it time to trust big tech?

Partnerships between public health services and big tech will bring new treatments to patients faster. But sharing data is still the big stumbling block.
Written by Daphne Leprince-Ringuet, Contributor

New technologies from AI to big data and robotics could significantly improve outcomes for patients across the NHS. But bringing those technologies into the health service also involves engaging with big tech companies and potentially sharing data about individuals and their conditions, which means that getting patients and doctors on board is one of the biggest challenges. 

There is good reason for private companies to eye the UK's public health services: the NHS's database is one of the largest and most valuable ones in the world. Made of primary care records of about 55 million individuals and a further 23 million records for secondary care, the organization's repository is estimated to be worth almost £10 billion ($13.4 billion) a year. 

Only last week in the UK, it was revealed that data about millions of patients from the National Health Service (NHS) had been sold to US drug giants, including Merck and Eli Lilly, for £330,000 ($441,612). 

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The anonymized data, derived from GPs surgeries, will be used for research; but the news further fuelled growing fear in the country that US corporations have their eyes on the NHS. 

But for Chris Alderson, partner at social care law firm Hempsons, the public's distrust of partnerships between public health services and private corporations is not only unjustified, it is also detrimental. 

"If we have public outcry about shutting down big data health projects, then the health of individuals will suffer," he said at a conference in London. "Once-in-a-generation opportunities to advance medicine will be lost."

That the NHS is teaming up with corporate organisations should come as a surprise to no one, said Alderson. "The private sector develops almost all the medicine we use," he said. 

"Data work is just another aspect of that industrial support for the delivery of healthcare. Those projects, if they are done well, are not about data being sold to big pharma. They are about people sharing information to develop better healthcare."

He said there is an "information gap" that exists between the public's perception of and the reality of healthcare deals. 

But not all projects to date have gone smoothly. In 2017, for example, the NHS provided the data of 1.6 million patients to Google DeepMind as part of a trial to test an alert and diagnosis system for kidney injury. An ICO investigation found that in doing so, the organization had failed to comply with the Data Protection Act, and that patients had not been adequately informed that their data would be used as part of the test. 

Alderson recognized that "historic projects are not the best practice guide". But looking ahead, he said, the only way to achieve the goals of public health services will be to "bake trust into the public" and make sure that partnerships can be defended, "even to the most cynical patients".

It starts with better safeguarding the anonymization of data. De-identifying personal information before sharing it is a requirement specified in the NHS's Confidentiality Rules; but in reality, said Alderson, there is still, in some cases, the risk of accidental or intentional re-identification of data when combining it with different sets of information.

NHSX, a unit within the NHS dedicated to driving the digital transformation of the UK's public health services, is ramping up its efforts to secure the trust of the public.

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Earlier this year, NHSX announced the opening of seven "data hubs" where pharma firms such as Novartis and Janssen will have access to information about millions of NHS patients' medical histories to boost the search for cures to diseases like cancer and asthma. 

Along with the announcement, the organization published a statement detailing the why and the how of the project. NHSX argued that the initiative will "speed up research" and "ultimately help save lives", and said that it was working to develop "the right ethical frameworks and guidance for the NHS".

"We have to avoid running before we can walk," said Alderson, "and start with strong foundations, with safeguards understood by everybody and applied properly." 

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