- Life science industry strategy proposes sharing patient data regionally and nationally
- It proposes new forum for researchers, including industry, to “engage with all national health data programmes”
- E-prescribing to be mandatory in hospitals
Ministers have have been urged to set out plans for a new national patient data sharing scheme to give researchers, including private companies, faster access to “de-identified” patient data from millions of records.
The proposals, set out in the new life science industrial strategy published today, represent the first attempt to establish a large scale patient data sharing scheme since the controversial Care.data programme was axed in 2016.
It follows NHS England consulting industry last year about the creation of new regional data collection schemes that would then fed into a national “data lake”, as HSJ revealed in January.
Initially between two and five hubs, covering populations of between 3 million and 5 million, would be established under the new proposals. However, eventually enough hubs would be established to cover the entire population and provide access to data nationally.
The hubs and centres will not only be used to build a “longitudinal” view of population health and care data, but also create “accelerated” pathways for researchers to access that data. This would include streamlining clinical trial and Health Research Authority approvals, as well as local data sharing agreements.
The strategy says: “This should allow federation and development towards the long term ambition of national coverage [of hubs to collect patient information and] would enable studies to be run across multiple hubs and de-identiﬁed data to be appropriately and securely linked to information from national datasets.”
The strategy places a big emphasis on health data as an untapped source of technological innovation and the importance of expanding commercial access.
The new network of “data innovation hubs” would also combine primary, secondary and social care records “to rapidly enable researchers to engage with a meaningful dataset”. The goals are consistent with those of aborted Care.data project, which was initially focusing on linking GP and hospital data but with a longer ambition of linking with social care data as well.
The strategy says the linked data would be of interest to “the research community beyond the NHS”.
“Many more people support than oppose health data being used by commercial organisations undertaking health research, but it is also clear that strong patient and clinician engagement and involvement, alongside clear permissions and controls, are vital to the success of any health data initiative,” it says.
The hubs would be run in line with recommendation of the third Caldicott review, which requires giving patients an opt-out from sharing their identifiable data beyond direct care.
Other recommendations include:
- Creating a forum for researchers, including commercial researchers, to “engage with all national health data programmes”.
- Adopting the recommendations of the accelerated access review to improve investment in UK clinical trials, including speeding up and simplifying assessments of new medical products
- National Institute for Health and Care Excellence’s funding for technology evaluations should be changed so they do “not stifle [small and medium sized enterprises’] engagement”.
- Create a new forum for early engagement between industry and relevant NHS bodies to arrange commercial access agreements.
- E-prescribing to be mandatory in hospitals.
- Setting up new national data registries, such as for rare diseases.
The hubs will each be aligned with an academic health science network footprint. Four to six “medtech centres of excellence” would be associated with the hubs, with each focusing on a different specific area of research, such as cardiac or digital health.
The new policy aligns with projects that have been developed since Care.data was scrapped.
In January, HSJ revealed that NHS England’s chief information officer Will Smart was consulting industry in the creation of new regional data collection schemes that would feed into a national “data lake”.
NHS Digital has also been working for more than a year on a new piece of technology, known as the national data services platform, which would centralise existing disparate identifiable health datasets into one repository, pooled centrally.
The strategy says the platform “should move to deﬁne standards and mechanisms to enable easy linkage and comparison of data from different sources”.
Nicola Perrin, who leads the Wellcome Trust’s understanding patient data initiative, said. “The recommendations strike a sensible balance between encouraging innovation through regional hubs while also building towards population level data, and recognise that an overarching national framework and interoperability will be key to achieve this.”
MedConfidential coordinator Phil Booth said: “Until we see what the NHS is planning itself, there’s nothing in here that wasn’t on the life sciences wish list four years ago in the flawed Care.data scheme; and nothing to suggest they’ve learnt any lessons.”
Jeremy Hunt also announced a range of funding allocations associated with the strategy on Wednesday. These included £13m for a new medicines manufacturing centre; £30m for new advanced therapies treatment centre; and £66m in a vaccine development centre.