NHS England has approved the expansion of a ‘secure’ data sharing platform, meaning that GP record data will be used for academic research related to non-Covid and major conditions.
OpenSAFELY, developed by the University of Oxford, was used by researchers during the pandemic to analyse anonymised data from GP records and help identify new Covid-19 treatments.
NHS England signalled in 2023 that it would allow expansion of the platform to other types of research beyond Covid-19, with support from both the BMA and the RCGP.
Now the commissioner has confirmed that it has shared draft documents with GP IT representatives which ‘extend the legal basis’ of OpenSAFELY to make it a ‘general purpose resource’ for academic research.
The platform has this week received £7m funding to launch a new research project into NHS talking therapy outcomes using GP data, as well as £10m to develop ‘new techniques for secure access to NHS data for research’. This investment from the Wellcome Trust will launch OpenSAFELY’s first venture into non-Covid research.
Professor Ben Goldacre, director of the Bennett Institute for Applied Data Science where the platform was developed, said the mental health research will rely on ‘secure analysis’ of NHS GP data at ‘unprecedented scale’.
‘We’re cautiously expanding to non-Covid research and the first big funded thing is mental health work,’ he said at a briefing on Wednesday.
NHS England’s director of data access Michael Chapman said they have been working with GPs to expand the ‘brilliant work done during the pandemic’ to ‘all diseases’, including cardiovascular disease and cancer.
He said on Wednesday: ‘So today we’re sharing with the Royal College of General Practitioners and the BMA the final drafts or documents to extend the legal basis beyond Covid-19 to make this a general purpose resource.
‘And those include the controls that we’ve agreed with them about […] how the profession will be engaged, the purposes for which the data can be used, and the purposes for which it can’t.’
NHS England confirmed to Pulse that these new legal directions need to be approved before the talking therapies research can go ahead, as currently the law only allows GP data to be used by OpenSAFELY for Covid-related research.
However, the commissioner has approved this expansion in principle and the official expansion is expected in the next few months following consultation with the BMA and RCGP’s joint IT committee.
This initial approval follows a Government-commissioned review in November which urged the Department of Health and Social Care to ‘accelerate the planned extension’ of OpenSAFELY to cover non-Covid health conditions.
The BMA told Pulse that they are ‘optimistic’ about the expansion of OpenSAFELY, but stressed the importance of upholding ‘the highest standard of patient confidentiality and security of patients’ data’.
Dr Mark Coley, the union’s GP Committee IT lead, said: ‘GPs take their responsibility as data controllers incredibly seriously and any secondary use of patient data must have a sound legal basis for its use along with appropriate oversight.
‘NHS England has been working with the profession to explore additional ways of using the coded data within the GP record, and, given the success of OpenSAFELY thus far for Covid-19-related work, we at the BMA are optimistic a way can be found to see this service expand carefully to non-Covid-19 purposes for the common good.’
Dr Coley also said the BMA has been ‘impressed’ with OpenSAFELY’s safeguards around privacy and their transparency, and he noted that the platform’s team has ‘engaged constructively’ with the IT committee.
The BMA has previously been cautious about the use of GP data for research, and in 2023 it refused to back a UK Biobank campaign asking all GP practices to release patient data via their IT systems.
OpenSAFELY’s design means that no patient-identifiable information is seen by its users, and the GP data does not leave the platform at any stage.
So far, the platform has enabled 181 research projects into a variety of Covid-related issues, including the demographics of those who get the virus and the efficacy of treatments.
The platform’s team has emphasised their commitment to trust and transparency, highlighting that GPs remain the data controller and that researchers never interact directly with the raw data.
Professor Goldacre pointed to the support of the BMA and the RCGP as a sign of the platform’s high privacy standards.
‘Because we put in so much work on privacy and transparency, we’ve been able to get support from all of the organizations that have historically objected to work on GP data,’ he said.
In October, the Government announced plans to make it easier for patient records to be used for research, by taking over responsibility for sharing data where patients have consented for it to be used in studies.
Health ministers have also pushed for a ‘single patient record’ in the NHS, with the Government pledging last year to introduce new laws to make patient data available across all NHS trusts and GP practices.
So finally a “cave in” to access to GP records through a back door originally meant for the Covid emergency measures. .Sad day for data protection and makes GDPR pretty spineless. Personally, I believe personal data belongs to the individual. Any “anonymisation” is not definitive and any initiatives like this should be opt in only. In this case it appears there is not even an opt out. It is simply monetisation of what is extremely valuable NHS data owned by the people who are unlikely to benefit from this financially but many institutions, companies especially big pharma will.
And guess who they will chuck under a bus for any Data breech.
Ben Goldacre was on the radio the other morning saying how GP records and data specifically are the “best in the World” and are a “gold mine” for companies and researchers
I wonder if GP will see even a small share of the profits or wealth created with the World-leading data GPs have so carefully created and curated over may decades…
OpenSAFELY isn’t a back door nor does it invoke techniques originally meant for emergency measures. It may have come into being during the pandemic but that was because there was a need for secure ways of doing research and doing it quickly. Trusted Research Environments were in their infancy. Under COPI pseudonymised event level GP data was shared with researchers via different routes and in some cases ended up outside TREs. Not ideal, but we were in an pandemic. The GPES Data for Pandemic Planning and Research (GDPPR) dataset was one such resource that was used. There was oversight from the profession for each use case and only the data needed to answer the research question was made available. There is work ongoing to make use of OpenSAFELY for wider research projects not limited to COVID-19. Everyone is treading very carefully. If you are concerned about use of your data you can register a Type 1 Opt Out with your practice. You may also like to ask your local ICS if they are using any shared care records they have for secondary uses.
OpenSAFELY may be a publicly-funded public asset (for now) and it may be a clever sell to get “partners” like the BMA and RCGP on board, but unfortunately there is a striking history of public funded goods (including research) which end up later on being monetised and earning extraordinary profits for the private tech and pharmaceutical sector (the internet browser, GPS, touchscreens, many drugs, including mRNA research leading to the Covid vaccine).
So I’m on the side of the sceptics and would be concerned about data rights, consent, privacy, transparency, liability (amongst others), and about the potential for private sector encroachment in the future in return for the revolving door for oily politicians.