The government wants to extract the general practice history of every patient in England by 1 Julie. Haven’t you heard? Ministers are not exactly shouting about this momentous news. NHS Digital, the body proposing the new scheme, has described it as a way to “improve” the collection of patient information that would allow better planning of healthcare services and use of data in medical research. But there are charging guidelines for the use of this data. One might reasonably conclude that the most sensitive medical details of the entire adult English population are being collected and some portion may be provided at “costs” agreed with third parties.
The records being stored contain the most private details of a person’s life. The proposals suggest mass collection of every English patient’s history, including mental health episodes, their smoking and drinking habits, and diagnoses of diseases such as cancer. But it will also include dated instances of domestic violence, abortions, sexual histories and criminal offences. Given the proposed scope of such a database, it is reasonable to ask who will be given this data, and for what purpose.
While medical bodies have been consulted, they have hardly given the plans a ringing endorsement. GPs may be reluctant, as they will be accountable for the data transfer. The audit trails of much less detailed hospital data which has been transferred to the private sector hardly inspires confidence in this government’s willingness to hold to account institutions that ignore safeguards. Campaigners point to shocking failures to enforce patient privacy, with little comeback for transgressors.
Engeland s’n 55 million patients have until 23 June to opt out of the scheme, but without a debate about the pros and cons, the public will have good reason to be wary. A perceived lack of transparency risks losing the trust of the public at a time when the health service needs to preserve it. That is why this process needs to be scrapped and restarted.
This scheme is not to do with the pandemic. “Control of patient information” notices currently allow for access, and data-wrangling rights, to health records in connection with fighting Covid-19. Allowing access to NHS data has led to some groundbreaking navorsing, notably helping to identify dexamethasone as an effective Covid therapy. Egter, this experience was born of acute need. The return of normal life is not an excuse to suspend the safeguards that protect patient privacy or allow third parties access to GP records, which cannot be rendered anonymous even by scrubbing some personal information.
This is the biggest data grab in the history of the health service. NHS Digital says that “we do not allow data to be used solely for commercial purposes”. That is hardly reassuring. If the data was just partly used for commercial purposes presumably that is fine with Matt Hancock, die gesondheidsekretaris.
The public is likely to take a dim view of a government that allowed informatics firms to pay for patients’ records, then sell “market access” and “market insights” for a substantial profit to a host of unreported drug, data and tech companies. There is no doubt about the power of AI to extract value by linking and reusing health data. It should ring alarm bells that ministers propose extracting sensitive personal medical records without clear purpose and with no meaningful information governance measures to keep pace with these developments.