We must look beyond privacy in the data-sharing debate, says Which? Computing columnist Rory Cellan-Jones. Do you agree?
What personal data are you most sensitive about and would not like to see shared widely online? Your date of birth, your mother’s maiden name, your home address – all useful to phishers and scammers?
No, I would bet it’s your medical records. The idea of deeply personal information about anything from a period of depression to a cancer diagnosis turning up online is understandably many people’s worst data nightmare.
No wonder there was an almighty hoohah last year about the plan to share the GP records of 55 million people across England with both academic and commercial researchers. Privacy campaigners cried foul, warning this was all being done in secret. ‘NHS Big Data Grab’ read one headline over a piece claiming that any promise that the data would be anonymised was worthless.
Soon, the scheme was put on the back burner while further consultations took place.
Sure, the policy was poorly communicated, and patients should be given the chance to opt out of such schemes. But in this case and in the wider debate about health data, the other side of the argument also needs to be heard. Because I want my sensitive health data – and yours – to be shared more widely.
Privacy and sharing of patient data
As someone with a serious eye condition and a more recent Parkinson’s diagnosis, I have been struck time and again by how paranoid the Health Service is about privacy and the sharing of patient data.
One example – on my annual trip to the excellent high street optometrist, something new appeared to pop up in a scan, and the signs of a malignant melanoma behind my eye were first spotted.
But the optometrist told me the system didn’t permit someone who wasn’t on the NHS network to email the scan to my GP or the hospital. Instead, she suggested I should take a photo of it on my mobile and show that to my doctor.
Even within the NHS there is caution about sharing data between different hospitals and GPs. That can mean important information is kept in silos. It turns out, for instance, that ocular melanoma and Parkinson’s can be connected, but I had to tell each of my consultants about that link because neither they nor their separate data stores talked to each other.
‘Fine,’ I hear you say, ‘go ahead and share your records, but don’t expect us to copy you.’ But for all the talk that our personal data is valuable, the truth is that it’s only in the aggregate that it is worth much.
Poorer health outcomes
If GP health records are to be of much use in investigating the causes of Parkinson’s, working out where budgets should be spent or predicting the spread of a new virus, researchers need as many of them as possible. If we’re persuaded to opt out of record-sharing in great numbers, there is the risk that incomplete data will result in poorer health outcomes for some.
We saw a similar row over privacy during the development of the NHS Covid-19 contact-tracing app in 2020. Campaigners warned a centralised app where some data would be held on a government server would somehow usher in an era of mass surveillance.
After some delay, the government switched to a decentralised system mandated by Google and Apple, which provided less detailed information about the spread of the virus.
Once again, vague fears about a threat to civil liberties seemed to carry more weight than the very real limits on our freedoms imposed by the lockdown regulations, which the app might help ease.
It’s easy to paint a lurid picture of the dangers of health records going astray. Let’s try as well to look at the brighter future that sharing our data could usher in.
Loading ...
