Experts, not MPs, should assess NHS data sharing - NDG

Independent advisor National Data Guardian for Health and Social Care urges more public involvement in decisions over health data

Dr Nicola Byrne, England's National Data Guardian (NDG) for Health and Social Care, has released her 2021-2022 annual report, recommending that the decisions about health data sharing should be taken by an independent body of experts and lay people, rather than politicians.

The NDG's latest report [pdf] describes the work goals for 2022-2023 while also looking back at the watchdog's activities during 2021-2022.

It comes just before the official launch of a competition to support a comprehensive Federated Data Platform (FDP) intended to store and analyse patient data in England. It is part of the government's plan to expand the NHS Covid-19 Data Store and Platform, which was created via a series of contracts without a formal procurement process.

The system, which was put in place in response to the pandemic, faced threat of a judicial review.

Citizen juries were later established as a part of the government's concessions in response to the legal pressure.

The £360 million FDP procurement is due to start with a contract notice next week.

According to Nicola Byrne, the new FDP has the potential to bring about a number of advantages, but as with any initiatives of this scope and significance, the NHS will need to do a lot of explaining if it wants to win the public's trust and support.

"As such, there needs to be a strong commitment to transparency and engagement; this is advice that I have given to the programme team. As the plans for the FDP progress, I will continue to engage with the programme on a number of key areas, including the essential requirement that the programme develops in a way which aligns with NHS values."

The NDG report says the majority of the citizen juries (77%) consulted on health data endorsed OpenSAFELY, an analytics platform for NHS electronic health records, believing it to be the most transparent, reliable and secure of the three data sharing initiatives studied (SCRAI, OpenSAFELY and NHS Covid-19 Data Store and Data Platform).

A group led by the University of Oxford and supported by NHS England developed the OpenSAFELY software platform for pandemic-related research.

The platform makes use of de-identified (pseudonymised) patient data obtained from GP patient records inside the confines of a trusted research environment (TRE), which allows researchers to analyse the data without the ability to download, copy or export it.

Jurors showed the lowest level of support for the NHS Covid-19 Data Store and Platform (38% of jurors strongly supported it) due to worries about a lack of transparency.

Additionally, the citizens' juries looked at whether programmes started during the Covid-19 emergency period should continue beyond it.

The majority of the jury members were in favour of all data sharing activities being continued for as long as they were beneficial.

However, very few jurors supported having the minister or organisation in charge of these initiatives make decisions concerning the future of those initiatives.

Most jurors said that the proposals for data sharing should be evaluated by an independent group of experts and laypeople.

The jury were of the opinion that the most important lesson for future pandemics is to improve communications and involve the public more in actions taken during emergency measures.