Legal threat grows over UK government plans to collect patient data from general practitioners
During COVID, a lot of health data was shared under extraordinary powers – including with private companies. But the government seems ready to make it the “new normal”.
An NHS Digital spokesperson this week sought to justify his plans by arguing that “NHS data was vital to managing the response to COVID” – but relevant health data can already be shared in the event of a public health emergency. Phil Booth of the medConfidential campaign group told openDemocracy it was “very cynical of the government to point out the targets of COVID and use it to justify a data entry.”
The government said the data would only be used “for health and care planning and research purposes” as well as “the development of health and care policy“- and that it will only be used” by organizations which can demonstrate that they have an appropriate legal basis and a legitimate need to use it “.
The problem is, they hardly told us anything about what would be considered “research objectives” or “legitimate need”.
Instead, they’ve released a succession of vague and inconsistent NHS Digital guarantees that give little confidence.
NHS Digital insists it doesn’t sell patient data – but then tells us the data will be made available to third parties for a fee.
He tells us that he has assessed the impact of his plans on our human rights and privacy – but that we are not yet allowed to see that assessment, less than three weeks before the data transfer.
He tells us that no data will be shared for “purely business reasons” – but few companies, especially those operating in the healthcare industry, claim to be “solely” motivated by their bottom line. The government itself has generally been sympathetic to business claims for higher goals. This insurance is therefore far from waterproof.
The government tells us the data will be “anonymized”, but recognizes that this process can be reversed and that individuals can be re-identified “under certain circumstances and where there is a valid legal reason” to do so. And he did not specify what those circumstances or reasons would be.
It tells us that companies accessing the data will be contractually prohibited from using other data sources to re-identify people, but we know companies don’t always play by the rules. This is why the new guidelines just published by the Information Commissioner’s office make it clear that anonymized data is always personal data and cannot be shared with anyone without informed and meaningful consent. This is exactly what the government – so far – seems determined to avoid.
He tells us that it is “engaged with the British Medical Association (BMA) [and the] Royal College of General Practitioners (RCGP)”- but these organizations clearly did not approve the current plans. RCGP President Martin Marshall said that while the organization supports in principle improved data sharing for “important health care planning and research”, it was “essential that this be transparent. and that patients have confidence in how the NHS and other bodies might use their information. ”He added that they“ continued to press NHS Digital to ensure that appropriate safeguards are in place for the how the data collected is used “.
The ‘mad rush’ for health data
General practitioners have stressed that there is a “safe environment” for the medical data they hold, which means researchers can access it without copies of our records being sent to third parties – but the government is choose not to use it. Why?
We know that access to NHS data is a key prize for the pharmaceutical and life science industries, as well as for artificial intelligence companies. The latter, reports the Financial Times this week, are now a “crazy raceFor health data, having seen their stock explode during the pandemic.
This is of interest to US insurers and healthcare providers as well, who, as openDemocracy has put it, are already bragging about the way they are “plant seeds”In the English NHS. These companies are already advising the NHS on how to deal with more ‘expensive“Patients, and what services could be cut. And openDemocracy also explained how unhindered access to UK data, including health data, is also a key demand for US trade negotiators.
Diarmaid McDonnell of the medical campaign group Just Treatment said: “For many patients, it’s not just about their data – it’s about the future of the NHS. We are sleepwalking in a healthcare system where benefits come first over patients, with big tech and pharmaceutical companies at the helm, shaping every decision about the care that NHS patients receive. “
The largest union in the public sector, Unison, called for data upload to be delayed until there is more transparency and consultation. The union called on the government to “harness the value” of our health data so that it can be “reinvested in health care and social services”, rather than allowing access for next to nothing.
The government does not appear to have built in effective safeguards to protect the intellectual property arising from this valuable data, which means that the products and services companies derive from it could be sold back to the NHS for attractive sums of money.
Health data is extremely useful in the hands of medical researchers. But any involvement of private companies should be open to public scrutiny and debate. Without it, trust is compromised as legitimate researchers will be denied the kind of comprehensive data that could be most useful.
Indeed, growing concerns about the government’s approach have led the NHS Digital call center to ‘collapse’ under the number of people calling it this week asking for opt-out forms, over half a million have already chosen to retire, according to Phil Booth of medConfidential.
Meanwhile, GPs – who are the legal guardians of confidential patient information – are deeply unhappy.
Rosie Sharpe, GP at Doctors’ Association UK, said: “GPs were barely aware of this major change – how are patients supposed to know? and warned that the government’s approach made the lives of doctors “impossible”.
A growing number of general practitioners refusal to transmit data July 1, even if that means breaking a legally binding order from Matt Hancock.
Jan Shortt of the National Pensioners’ Convention said the government’s approach had “excluded the elderly” and added that the organization was “very concerned about the lack of consultation and publicity on this subject, except from an isolated government website. Most of our members have never heard of this.
The race to roll out the program while the public and the medical profession are still reeling from COVID means there is little time for journalists and members of the public to use freedom of information laws to learn more about what’s going on – including how the government thinks its actions may possibly comply with data protection laws.
The government is hiding behind secrecy and ambiguity as it runs until July 1.
So we had no choice but to issue an urgent legal warning. Because we believe there is an urgent need for the public to know what the plans are for their personal information and to have an opportunity to consent – or not – before it’s too late.
The coalition is launching crowdfunding today to cover the cost risk of the legal claim.