The Covid survey and your data

The ONS wants health records for another 15 years.

Last month I wrote about the GP health records data sharing scheme - and my impatience with the delays to a project where I feel the benefits outweigh the privacy concerns. So I was interested to receive an email this week from the National Statistician Professor Sir Ian Diamond wanting more access to my. data.

Just to be clear, this was not a personal email but one sent to everyone who is participating in the Office for National Statistics’ Covid-19 survey. Every month someone turns up at my door, asks me a whole series of questions - “how many times have you been to the shops this past week?” “how many people over the age of 70 have you had close contact with?” - and then gets me to swab my throat and nose for a PCR test. A few days later I get sent the result of the test (always negative so far) and a £25 voucher to spend at a wide range of retailers - which is nice.

But nicer still is that this ONS project has been a vital tool in tracking the pandemic and also, according to Sir Ian’s email, “the impact of vaccines on getting and passing on COVID-19.”

When I signed up, the email told me, I agreed that the ONS could link the data I gave them with my NHS health records and go on doing so for a year after my final visit from the researcher. This enables the statisticians to find out things like how much having COVID-19 or being vaccinated affects how often people go into hospital or visit their GP. 

Now, though, Sir Ian wants an extension of that data sharing - and not a small one. The ONS wants to go on linking the survey and NHS data for 15 years after people leave the study. It also wants to look back as far as January 2016 at their health data to make sure it can take account of any health conditions they had before entering the study.

In my case, that would include the ocular melanoma diagnosed in 2005 and my Parkinson’s diagnosis from 2019. Why do they need this information? Because it will help researchers work out whether people who have had Covid-19 are more likely to get other conditions in the future.

If they don’t want this data sharing to happen, users are given an email address or a phone number they can contact to opt out. Now, this is exactly the kind of mission creep privacy campaigners warn about in data collection exercises of this kind, and I imagine quite a number of people will refuse to agree to the extension.

But I won’t be opting out. After all, the whole point of joining the survey was to give the NHS more information to plan ahead - and as it now struggles to deal with a backlog of patients with conditions other than Covid the insights the data will provide may become even more valuable. Unlike some of the government’s attempts to communicate health information during the pandemic, Sir Ian’s email is admirably clear and informative.

If you stood on your doorstep in 2020 banging pots and pans to show your appreciation for the NHS, that was a nice gesture. But handing over your data would be a lot more useful.

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