Use of Patient Data

Jim Shannon Excerpts

Thursday 24th June 2021 Commons Chamber

[Mr David Davis (Haltemprice and Howden) (Con)]

In winding up the last debate, the Minister for the Armed Forces referred to volunteering a mucker for the guardroom. I hope that my entire speech does not sound like that to the Secretary of State; it is not intended to.

Every couple of years, Whitehall, like an overexcited teenager expecting a new mobile phone, becomes fixated with data. Most recently, it has been about the power of big data mining, and I am sure that that is not just because of the influence of Mr Dominic Cummings. The Department of Health and Social Care wants to open our GP medical records—55 million datasets or thereabouts—to pharmaceutical companies, universities and researchers.

Managed properly, that data could transform, innovate and help to overcome the great challenges of our time, such as cancer, dementia and diabetes. Those are proper and worthwhile ambitions in the national interest, and I have little doubt that that was the Government’s aim, but that data is incredibly personal, full of facts that might harm or embarrass the patient if they were leaked or misused. Psychiatric conditions, history of drug or alcohol abuse, sexually transmitted infections, pregnancy terminations—the list is extensive. Revealing that data may not be embarrassing for everyone, but it could be life-destroying for someone.

Unfortunately, in keeping with the Department’s long history of IT failures, the roll-out of the programme has been something of a shambles. The Government have failed to explain exactly how they will use the data, have failed to say who will use it and—most importantly—have failed to say how they will safeguard this treasure trove of information. They describe the data as “pseudonymised” because it is impossible to fully anonymise medical records, a fact that is well understood by experts in the field.

Even pseudonymised, anyone can be identified if someone tries hard enough. Take Tony Blair, who was widely known to have developed a heart condition, supraventricular tachycardia, in October 2003. He was first admitted to Stoke Mandeville and then rushed to Hammersmith. One year later, in September 2004, he visited Hammersmith again for a corrective operation. Even the name of the cardiologist is in the public record. A competent researcher would make very short work of finding such individual records in a mass database. That cannot be for the public good. Moreover, the Government seem to intend to keep hold of the keys to unlock the entire system and identify an individual if the state feels the need to do so.

[Jim Shannon (Strangford) (DUP)]

I congratulate the right hon. Gentleman on securing the debate; I have been inundated with the same concerns from many of my constituents. Does he agree that a system that allows a diversion from the court-appointed warrant to collect information is a dangerous precedent in terms of judicial due process? We must ensure that anyone who opts out is completely opted out, as is promised.