Amid increasing calls for transparency in healthcare, a novel research platform borne from the Covid-19 pandemic could be a beacon in how to gather large amounts of data whilst maintaining patient privacy.
It’s fair to say the relationship between patient data and clinical research has historically been troubled, with non-ethical sharing of patient records and lack of transparency in research being frequent occurrences. Mandates by regulatory authorities and healthcare bodies have ushered in more accountable and transparent medical research in modern times. Still, a new platform goes one step further – to the national level.
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Developed at the University of Oxford’s Bennett Institute for Applied Data Science, OpenSAFELY is designed to keep patient data confidential and secure while facilitating the use of 58 million patients’ full GP records in medical research.
“We had to build new methods for privacy and transparency in open-source tools that can be built in any data centre, in particular where the electronic health records already sit,” Ben Goldacre, director of the Bennett Institute for Applied Data Science, said at the ongoing HETT (Healthcare Excellence Through Technology) 2024 conference in London, UK.
The platform, which became a key tool in research on Covid-19 treatment during the pandemic, allows academic researchers to use patient data without actually seeing it. OpenSAFELY is unique in that patient data never leaves primary healthcare platforms, instead only being accessed by instructions – sent as code – by researchers. Goldacre likens the service to ‘digital robots’, which take the code to where the data is housed and then send back the results.
The codes, which are open source, increase transparency, quality checks, and accountability. This gives the service robust data quality, especially pertinent given the emergence of several fake analyses during the pandemic.
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By GlobalData“Sharing code is amazingly efficient for reuse. It’s amazingly good for quality checks by a community and for accountability. It proves that you’ve actually ‘done a thing’”, said Goldacre.
The enormous wealth of data contained in GP records means they are a “unique opportunity”, according to the British physician.
OpenSAFELY had to overcome several hurdles around patient safety but catalysed by the pandemic, was up and running in 42 days. Indeed, the project even satisfied one of Britain’s largest privacy advocates, MedConfidential.
The project is a rare example of successfully assimilating such vast quantities of health data and, according to Goldacre, provides insights into the key steps needed to calm fears from stakeholders in the sector around confidentiality.
The heterogeneity and complexity of England’s patient records is beneficial in scientific analysis and comes at a time when regulatory authorities – including the US Food and Drug Administration – are requesting more diversity drives in clinical trial populations. Along with this, the FDA has also reiterated the need for clinical trial transparency which it says is “essential to scientific advancement”.
Accelerated by the National Health Service (NHS), OpenSAFELY is running 171 projects from 22 organisations. Amongst the users are several universities, the National Institute for Health and Care Excellence (NICE), and the UK Health Security Agency (UKHSA), among others. A total of 86 academic papers have been published, thanks to the platform.
Now, the platform’s engineers are eyeing an expansion into applications beyond Covid-related data. The NHS is set to widen the scope of OpenSAFELY to help drive advances in other major diseases, as per a November 2023 statement.
“Non-Covid projects will hopefully happen over the next couple of months,” Goldacre added.
