Government announces plans to improve NHS patient data access to third-party researchers while boosting patient access to medical records via NHS App
The government has announced a strategy to improve the use of data within the NHS, which it says will support greater efficiency as the health service aims to clear its Covid-19 backlog.
The strategy includes a focus on providing private-sector researchers with access to individuals’ healthcare data, a drive that has proven controversial with patients in the past.
But health secretary Sajid Javid said there would also be simplified processes for opting out of data sharing.
Patients are also to be given more access to their records via the NHS App, while the government will provide £25 million in 2022-23 to improve the implementation of social care data to bring it in line with the NHS.
This is to include the adoption of Digital Social Care Records (DSCR) to ensure data is captured at the point of care and can be shared between care settings.
Javid is expected to launch the strategy today at London Tech Week’s HealthTech Summit.
“This landmark document will look at how we can build on this momentum and apply the lessons challenges ahead of us, including tackling the Covid backlog and making the reforms that are vital to the future of health and care,” he is expected to say.
Plans to provide patients’ health data to researchers have proven controversial in the past.
Under the latest scheme, Javid said Secure Data Environments would be made default for NHS and social care organisations when providing de-identified data for research.
This means data linked to an individual will remain on a secure server and can only be used for agreed research purposes.
Trusted Research Environments (TREs), a form of Secure Data Environments, are to be established for researchers to access NHS data following a £200m investment.
The government said this would help the NHS to deliver “cutting-edge life-saving treatments and diagnosis” to patients faster through clinical trials, while facilitating more diverse and inclusive research.
But Javid acknowledged patients may resist allowing researchers at private firms to access their personal health records, even in a de-identified form.
He said that while “most people want their data to be used for good” the plan would “make the opt-out system simpler and more transparent”.
Other plans include improving patients’ access to their data via the NHS App, with the goal of providing the latest health information over the app by November of this year and historic information including diagnosis, blood test results and immunisations by December 2023.
Use of the app has jumped during the pandemic, with 28 million now having the ability to access their data and services.
The government wants the app to be a “one-stop shop” for health needs and the strategy aims for 75 percent of the adult population to be registered on the app by March 2024.
NHS Digital chief executive Simon Bolton said the Data Saves Lives strategy was a “significant milestone in enabling us to deliver the digital transformation of the NHS”.
Professor Ben Goldacre of the University of Oxford praised the government’s plans to provide data to researchers, saying this would “unlock the vast potential in all patient data for research”.
The plan comes almost exactly one year after groups representing GPs and Conservative MP David Davis criticised a previous government plan of gathering the full medical histories of 55 million patients in England into a single database that would be available to academic and commercial third parties for research and planning purposes.
The groups warned at the time that “rushing this major change through with no transparency or debate violates patient trust, and that doing so without patient consent is unlawful”.
The General Practice Data for Planning and Research (GPDPR) placed strict limits on patients’ ability to opt out.
The government in 2016 scrapped an earlier data-sharing plan called Care.data, initially announced in 2013, amidst criticism around privacy implications and other issues.