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Gerry White's avatar

It can't be said enough, we need to encourage more people to agree to have their health data made available for research. Well done for volunteering, and promoting this.

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Peter Coghlan's avatar

I'm not a privacy campaigner although I have been working in this field for some years which has helped provide a perspective on the value of healthcare data to the NHS, DHSC, Local Government and external healthcare organisations. So in principle, I'm all for sharing relevant Covid-19 survey data and health information with the ONS which is looking at the spread of the virus in communities with the aim of forecasting future healthcare requirements.

However, when I see an ONS statements such as "Information that can identify you will only be held by the ONS and IQVIA for the purposes of the study", it sets alarm bells ringing. There is very little information on what personal or health information this external US data science company has access to or what permissions they have been given by ONS or indeed the NHS on what they can do with it.

The ONS survey shouldn't be conflated with the recent NHS care.data lookalike that was poorly constructed and badly publicised last year. The reasons it failed and was shelved was because the prospect of sharing data with external, unspecified organisations didn't offer sufficient safeguards i.e. the true anonymisation of records. It also offered a very short timescale within which individuals had to decide to remain in or opt out of a proposal which provided little information on what might be shared and with whom.

Covid-19 has provided an opportunity for data harvesting, the like of which we have never seen before. But as we've seen with the purchases of PPE and the government's own VIP lane, some actions have been taken in the public interest which in itself is not a bad thing but is easily corrupted. Public interest doesn't obviate the need to maintain safeguards over the privacy of individual healthcare data which has a value beyond that of the analysis of anonymised healthcare data.

How many of us scoffed at those who warned about the intrusion of Facebook into manipulating the minutiae of our personal lives to generate billions in profits at our expense?

Healthcare data is even more valuable and we make it freely available at our peril.

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