Why I support the NHS patient data sharing plan | Polly Toynbee
WWho would trust Boris Johnson to keep their deepest secret? Would you dare lend him something precious and trust him not to whip him when he needs money? These kinds of questions are the reason why citizens may be reluctant to give the Prime Minister the keys to their medical records, revealing who has addictions, dementia, psychosis, sexually transmitted diseases, has suffered domestic violence or has suffered. an abortion. People trust their GPs with this personal information and understandably GPs have a suspicious eye on the Johnson diet, needing irrefutable assurances that the use of these records for research purposes is protected by the law. strictest protections.
There are times, never more than in a national crisis, when citizens need to trust their government. At first, many were suspicious of vaccines promoted by people on the catwalks in Westminster, until more trustworthy local people allayed their suspicions. Ipsos Mori veracity index now shows that local pharmacists top the list for trust, followed by nurses, then doctors, teachers and scientists. The politicians, always low, have fallen even lower.
Here’s why earning the public’s trust is important right now. The NHS has the world’s richest patient database – a treasure trove for researchers – because most other countries do not have such a unified system. Its use during the pandemic dramatically accelerated vaccine development, while lists of protected patients, quickly assembled for the first time from all GP and hospital records, helped protect the most vulnerable. A data trawl quickly proved the value of dexamethasone, saving many lives. Data helps track Covid along. But all this was done by emergency authorization: now, researchers want permanent access.
Yet the lack of confidence in the government risks putting it at risk. The government announced general practice data for planning and research (GDPR) quietly in May, giving patients until June 23 to opt out – if they could find their way to an obscure government website, print out a form and deliver it to their GP’s office.
This is likely to repeat what happened eight years ago, when the ill-fated Care.data plan was sunk by a lack of consultation with anyone affected and sinister business interests. Once again, the government is rushing for data without getting approval from general practitioners for handing over their precious records and without explaining the now much better protocols, safeguards and guarantees. Campaigners want a parliament vote to ensure data security – and why not?
Impatience, incompetence and arrogance must not sink a plan of untold medical value: Data on every hospital visit has been collected for decades and safely anonymized in medical research. He gives each hospital a dashboard indicating the effectiveness of its treatments, how many patients need to be readmitted and how many survive. But researchers have no way of knowing what happens next to patients, once they return to their GPs, whose records remain locked in their offices.
Hospital data has revealed the shocking fact that a quarter of cancer cases are diagnosed after the patient presents to the emergency room, usually much too late. But research into why and how to avoid this delay has been hampered by the lack of access to GP patient records; these may have shown if they complained of other symptoms first, if any symptoms were missed, or if patients did not see their GP until they ended up in the hospital.
The data collected may reveal facts that no one is researching: Patients taking metformin for type 2 diabetes were less likely to develop cancer. No one knew why, but it opened up a whole new area of cancer research.
Scotland is collecting data on NHS patients, which found that when parents quit smoking in front of their children, fewer children were admitted to A&E with asthma attacks.
When fraudulent research in the 1990s suggested a link between the MMR vaccine and autism (as dangerously promoted by the Daily Mail), prompting a massive boycott of jabs, only a trawl of GP records of vaccinated children, following their progress over the years, has definitely debunked any hint of a link.
Now a pointed letter at NHS Digital, which is in charge of the new plan, Professor Martin Marshall, head of the Royal College of GPs, and Dr Richard Vautrey, chairman of the BMA’s GP committee, forced the government to delay its deployment until in September. This time, crucially, GPs are do not block the plan but support “the principles of new data collection by promoting data sharing”. Their concern is that the public does not know enough, and GPs have been released from the legal obligation to “communicate with patients at a time of extreme workload and focus on the immunization program.” Covid-19 ”. A host of other organizations threat of legal action unless the plan is delayed – all, like the Royal College and the BMA, calling for “immediate action to conduct a public information campaign … to ensure that the public is properly informed about this new collection and its options in terms of withdrawal ”.
But why would you refuse? For the research to work, most people must be included: those who opt out may belong to specific groups, whose risk of disease might be overlooked. Tracking diseases across entire populations through life cycles reveals a wealth of invaluable information for the benefit of all. Too often, fear of data collection kills good projects: Labor’s child welfare registry, ContactPoint, has reportedly saved many people from neglect and abuse by reporting any child a professional worried about, but conservatives called it a “nanny state intrusion.”
To counter the recalcitrant, an independent group, Use MY data, set up by cancer patients, campaigns so that patients do not disengage but consent to the use of their data. But they also say September is still far too early to ensure informed consent, wanting a letter to be sent to every household telling people they can opt out, to make sure GPs are happy with a full transparency about who has access – with no data sold for other purposes – and the Information Commissioner and National Data Custodian’s Office involved in the process. UseMYdata, however, is convinced that anonymity is secure: it would take a “monumental” hacking effort to identify an individual patient. Some, like David Davis, believe that no data transmitted over the Internet will ever be secure. But does this risk outweigh the benefits?
Once again, this government’s authoritarian failure to consult openly so that everyone understands the purpose and benefits of its plans could sink this valuable research tool. Paranoia about the Big Brother state has increased, confidence is waning. But now, more than ever, people can see lives saved by vaccines – yet we cannot expect medical research to work miracles. While the safeguards are there, in the enlightenment mind, now is not the time to deny the NHS the use of all of our records.