Head of government GPDPR review opted out of scheme

Professor Goldacre had concerns about the risks of deanonymisation.

Professor Ben Goldacre of the University of Oxford, who conducted a Government-commissioned review into an aborted programme to share GP health data, has admitted that he personally opted out of the scheme due to concerns about deanonymisation risks.

Professor Goldacre believes the Government made a mistake by launching the General Practice Data for Planning and Research (GPDPR) project before establishing a "trusted research environment."

The comments were made before the House of Commons Science and Technology Committee, during an evidence session on the right to privacy with digital data.

NHS Digital announced the GPDPR initiative last May, touting it as an improved GP data collection system used for a 'wide variety of research and analysis to help run and improve health and care services.'

Under the GPDPR a range of information - including details of gender, ethnicity, sexual orientation and other data from patient records held on GPs' systems - would be gathered into a database and made available to approved researchers and private commercial organisations.

The new service was due to come into effect on 1st July 2021.

However, privacy advocates warned that it could expose sensitive patient data to private companies.

Critics said the scheme was being implemented too quickly and without enough consultation.

Taking note of the objections, Parliamentary Under Secretary of State Jo Churchill announced in June 2021 that the Government was delaying GPDPR until 1st September 2021, to give GPs more time to communicate the changes to patients.

Nearly 1.4 million people opted out of the scheme in just two months (May and June), forcing the Government to put the scheme on hold.

The Government subsequently asked Professor Goldacre to head an official assessment of the data sharing plan. Following his assessment, he proposed that a government body could serve as data controller for a copy of all NHS patients' records in a trusted research environment (TRE).

This collection of copied records could be used to extract data for research and other purposes.

While testifying before the parliamentary Science and Technology Select Committee this week, Professor Goldacre said it was a mistake to try to begin such a massive project without proper communication with the public.

"I think it is a mistake to launch an enormous programme like that without first of all making it clear to patients exactly what the mitigations will be. I think the national GP dataset is so granular and so comprehensive in its coverage that it wouldn't be appropriate to share it outside of the TRE."

Goldacre told the committee he was one of individuals who had refused to allow their data to be used.

He said he revoked his consent because he knows so much about "how this data is used and how people can be deanonymised".

"And also because, in the past, I've been in the public eye from doing public engagement work, and I have friends who have had their data illegally accessed through national datasets, although not health datasets. And I suppose, because I work in this field, the risks are very salient to me."

He went on to say that the Government's commitment to strengthening rules before starting the data scraping was to be applauded, especially the promise to set up a TRE where approved researchers could work safely on pseudonymised data.

"That, as I understand it, is now policy, so we have a very positive future ahead of us, in part because trusted research environments don't just mitigate privacy risks - they also make for a much more productive environment for working with data," he said.

Goldacre advised that the Government should even consider prison sentences for anyone who misused sensitive data.