Baroness Ludford (LD)

My Lords, my question to the Minister follows on from the previous question. How will we know that the necessary cultural revolution among stewards of medical data has taken place? What has happened—that UK Biobank allowed the download of the data—is frankly astonishing. I must admit, I have been worried about this sector since I was first involved in the drafting of the GDPR as an MEP nearly 15 years ago. I have also felt that the UK authorities were a little casual in the information given to patients. I do not know if anyone remembers care.data, with the obfuscation about opt-ins and opt-outs and moving the goalposts and so on. The chief executive of UK Biobank made the usual sort of statement: “We take the protection of participants’ data extremely seriously and do not tolerate any form of data misuse”, whereas other, more realistic commentators have used adjectives such as “supremely careless”, “irresponsible” and “cavalier”. How will the Information Commissioner get proactive in this area? It is a betrayal of patients’ trust. Of course we want research. I have been tangentially involved in research for a cure for diabetes, because my late husband was type 1, and he was involved in this area. The fact is that this was re-identifiable data. Some press referred to it as “anonymised”; it was not anonymised. If it was anonymised, it would not be personal data. It is capable of being re-identified if you know some things about someone that are in the database. As Sam Smith of medConfidential said: “If I knew that someone had a kidney removed on a particular week in June 2021 as Wes Streeting did, I would know everything else about them”. I do not know whether that is true, but these guys know what they are talking about. As I said, how do we make sure that there really is a cultural revolution? Otherwise, we are not going to have patients’ trust in this essential area.