I am waiting for a letter from my GP’s surgery asking me whether I consent to having my medical data uploaded on to a national database and made available to researchers, but it doesn’t seem it is going to come.
In fact, I wouldn’t be surprised if there are millions of people in Britain who are unaware that, unless they formally object by June 23, then a week later their health records will be added to an NHS Digital database, which could then be shared, in anonymised form, with universities, pharmaceutical companies and technology companies.
The NHS says it has tried to make people aware of the move since 2018 when it launched a poster campaign in surgeries and hospitals — and put the information on its website. Given that we have been discouraged from face-to-face appointments with our GPs over the past 15 months, I wonder how many people have ever seen such a poster. I certainly can’t remember it.
The NHS also says that you can opt out of sharing your health records via the NHS app — the pre-Covid app it launched in 2018 to help people book appointments and access advice on health conditions.
But then if you are the sort of person who is worried about the misuse of personal data there is a strong chance you haven’t signed up for the NHS app or, indeed, any app — given that apps in general seem to be elaborate devices to harvest our personal data. Should I send in a letter to my surgery asking it to keep my data private? I am quite conflicted. The past 15 months have shown us the importance of data collection in fighting a pandemic. Without the NHS being able to collect data on how many people are being infected, hospitalised and dying from Covid-19, we would have no way of knowing how the disease was spreading — and therefore little hope of fighting it.
Moreover, without pharmaceutical companies having the ability to study personal data on symptoms and side-effects we would not now have the vaccines which are helping to beat the disease. Nor would we have found out that dexamethasone reduces the death rate in hospital patients.