GP practices in England have been instructed to hand over their patients’ entire medical histories with just six weeks’ notice. Like many GPs, I’m very concerned about the implications this has for my patients. A growing number of us in London have taken taken the decision to pull the plug on the new data-sharing programme with NHS Digital and refuse to hand over patient records.
This data grab is unwarranted, unparalleled in its scale and implications and quite possibly unlawful. Yet NHS Digital, acting at the government’s request, has downplayed the significance of the move. There has been no public awareness campaign, so you’d be forgiven for not knowing that your consent is assumed, or that you have only until 23 June to opt out from having your GP data extracted.
What this means in practice is that all your GP interactions, starting from the time you were born (and including many of the most intimate details of your life) are at risk of being indirectly sold to corporations. To be specific, your GP data includes details of physical, mental and sexual health, drug and alcohol history, and any family and work-related problems that you thought you’d disclosed in confidence. What’s worse, your personal information will not be fully anonymous, meaning it is relatively easily identifiable as yours (you can opt out after 23 June, but NHS Digital holds on to whatever data it has obtained, and still makes it available to third parties).
We’ve been here before. A national programme launched in 2013 to extract GP medical records, “care.data”, was scrapped following concerns about the security and confidentiality of “pseudonomised” data sharing and a lack of clarity and transparency about who could access this data and how it would be used. In 2016, Google DeepMind established a data-sharing agreement with the Royal Free hospital in London. The hospital was found to have failed to comply with the Data Protection Act in handing over the personal information of 1.6 million patients without adequately informing them. But rather than learning from past scandals such as these, the government has instead decided to pursue this data grab by stealth, under the cover of a pandemic.
Our health data has the potential to save lives. GP patient records are the single richest and most valuable source of this kind of information. Artificial intelligence and medical research companies can use health data to train machine-learning algorithms that can detect patterns, diagnose patients and identify new avenues for treatment. But this can be a mixed blessing, depending on how the data – and the products made with it – are used. Research and development depends heavily both on public data and public funding, but if the tools developed using our health records aren’t made publicly available, then not only have we handed over our health data for free; many people won’t even be able to access the treatments and innovations developed using it.
Personal health information should be held in trust and put to good use in the public interest, be it tailoring local services, improving public policy or driving research and development for publicly available treatments. But it is open to abuse when it’s mishandled. NHS Digital has developed a highly secure “Trusted Research Environment” that provides researchers with safe access to data, without sending out copies. Why, yet again, is the government choosing not to use it?
This latest data grab is symptomatic of the lack of representation, transparency, and accountability within both Whitehall and NHS England. We desperately need a public conversation about the influence corporations are exerting on ministers and political processes, and what this means for democracy. Greensill’s lobbying of the head of NHS England is just the latest example of the problem of corporate capture at the heart of our health service.
For now though, if you are registered with a GP in England, you have less than three weeks remaining to opt out of GP data sharing for purposes beyond your direct care (should you decide to do so, you can opt back in at any time). At minimum, the government should extend its notice period from four weeks to six months so GPs can inform our patients and provide them with relevant guidance. I’d urge that our health data is only ever used within the NHS “Trusted Research Environment”, with full transparency over how it is used.
Our GP records are an extension of who we are. To treat them with the care and respect that they warrant is to treat us with care and respect. Personal health data should be used in an informed manner and in the public interest, not exploited for corporate profits. It is precisely with this in mind that GPs like me are refusing to comply with this programme. We encourage our colleagues throughout England to join us. The NHS is founded on the trusting relationships between doctors and their patients. It should never be used as a logo for ministers to shield corporate greed.
Ameen Kamlana is a GP in east London and an NHS activist
Source: Thanks msn.com