The UK Government has published a draft data strategy for health and social care including a new duty to share anonymised data across the system.
The Department for Health and Social Care (DHSC) said the strategy, Data saves lives: reshaping health and social care with data, builds on the sector’s use of data during the Covid-19 pandemic and claimed it has privacy and security “at the core”.
It highlighted the duty to share data, along with a plan for legislation to require all adult social care providers to submit information about all the services they fund to give staff more information in providing care.
Other elements include giving patients easy access to their test results, medication lists, procedures and care plans from across all parts of the health system through patient apps; and consolidating the use of personal data to analyse trends in public health and support the planning and commissioning of services.
Health and Social Care Secretary Matt Hancock (pictured) said: “Data saves lives. More effective use of data will deliver better patient focused care. It will free up staff time to focus on patients and allow clinicians to make better, more informed decisions on treatment and support.
“The pandemic has taught us we must be bold and the great strides we have made on vaccines and treatments during this time have been made possible by the way we use data.
“This strategy seeks to put people in control of their own data, while supporting the NHS in creating a modernised system fit for the 21st century which puts patients and staff in pole position.”
The document outlines three key priorities: to build an understanding for how data is used to support innovation and improve transparency; to make appropriate data sharing the norm across health, adult social care and public health; and to build the technical, legal and regulatory foundations to make it possible.
Its chapter on “bringing people closer to their data” includes: the plan for digital access to personal information; systems to manage appointments, refill medications and to speak with staff; and the ability of a patient to share additional data they may have collected on issues such as sleep and exercise.
This is accompanied by a commitment to improve information governance guidance to staff, digitalise personal child health records, ensure the technology is in place for all patients to have access to their records, enable people to see what research their data has informed, and publish a transparency statement on how data has been used in the sector.
The section on giving health and care professionals the data they need includes plans to: embed the Information Governance Portal as a one-stop shop for relevant guidance; create rules around different types of data – such as psuedonymised – that staff can clearly understand; develop a national information governance strategy; review toolkits and language; and develop new e-learning packages for staff.
These steps will come with the “duty to share” data, supported by relevant legislation “in due course”; and ensuring that each integrated care system (ICS) has a basic shared care record in place by the end of September this year.
Efforts to support local and national decision makers with data will include ensuring adult social care providers with digitised records are included in the integration of shared record solutions by September of next year. This will contribute to the analytics capabilities of the health and care sector, along with plans to: develop an analyst workforce observatory to support skills development; create an online analytics hub for training and other resources; pilot a data and analytics accelerator; roll out a unified set of competency frameworks; and run a champions programme.
In addition, any source code that the DHSC produces or commissions will be made open and reusable under the appropriate licences.
A chapter on improving data for adult social care points out that few providers currently have online access to information about the people in their care, and that local authorities only collect data on the services they fund, which leaves significant gaps.
It highlights the importance of the Digitising Social Care Records programme, along with plans for a data framework for the setting, the legislation for providers to supply information, and encouraging more bodies in the sector to use NHSmail.
Plans to support researchers with data are potentially controversial given the recent protests about the plan for a General Practice Data for Planning and Research service. The strategy highlights the ongoing review, led by Dr Ben Goldacre, into the more efficient and safe use of health data for research and analysis, and says there will be investment into improving the quality and accessibility of at-scale data assets that make the most of the UK’s health and care data. This will include building on platforms such as NHS DigiTrials to enable and support best use of data and digital tools.
The section on developing the right technical infrastructure includes: agreeing a target data architecture for health and social care; mapping the technical debt for national systems; providing services to retrieve records from wherever they are located; developing APIs for access to multiple systems; developing data infrastructure services to support interoperability; and building centres of excellence in data architecture.
These come with efforts to manage cyber risk through steps such as setting clear standards for organisations and developing a long term plan for cyber in the sector.
The final chapter, on helping developers and innovators improve health and care, includes the NHS AI Lab’s work on a regulatory framework and strategy for the sector, and the development of unified standards for testing AI solutions.
DHSC has made the draft available for public consultation and plans to publish a final version by the end of the year
Adam Steventon, director of data analytics at the Health Foundation, commented: “We very much welcome the data strategy. Health data has played a critical role in the last year – from tracking Covid-19 outbreaks and developing treatments, to getting people booked in for their vaccines.
“It is particularly positive that the Government has committed to building analytical and data science capability in the NHS and to improving data on social care. The next steps are to build public trust and demonstrate how their data is improving the NHS and saving more lives.”
Image from Richard Townshend, CC BY 3.0