Improving trust in the health and care system’s use of data
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We will work with expert partners and the public to implement secure data environments as a default across the NHS.
We will work with the public to establish, for the first time, a data pact that will set out how we will use health and care data, and what the public has the right to expect.
We will co-design a transparency statement, as part of a regularly updated online hub, setting out how publicly held health and care data is used across the sector.
We will lead the work of the Health and Care Information Governance Panel to develop additional information governance guidance, including the first part of the information governance frameworks for integrated care covering individual care and standards (such as data-sharing and transparency), so the public can be confident in our handling of their data, to be published on the information governance portal.
We will establish an expert advisory group drawn from a wide range of stakeholders from across health and adult social care with whom we will co-design a robust and detailed plan for rebuilding public trust, including commitments set out here, and provide a check and challenge function to make sure we never fall below the ambition and standard set out in this strategy.
We will agree, with the expert group, how we will transparently measure and monitor levels and drivers of public trust so that all organisations using health and care data have up-to-date information about the public’s attitudes to data use.
We will develop a central portal for data partnerships guidance for healthcare leaders and seek feedback ahead of a wider roll-out.
We will publish the value sharing framework, which will support the health system to deliver good data partnerships.
We will update the 5 principles to include the adult social care sector.
We will develop commercial principles to ensure that partnerships for access to data for research and development have appropriate safeguards, and benefit the public, and the NHS and NHS Digital’s template contracts for access to data will be reviewed to ensure they are consistent with these principles.
We will develop a standard for public engagement, setting out best practice for health and care organisations, and any other body using NHS data, to engage appropriate with the public and staff across the system on data programmes and issues.
We will undertake in-depth engagement with the public and professionals through forums such as focus groups with seldom-heard groups, and large-scale public engagement on topics and questions that are high priority or particularly complex, including how we deliver secure data environments and the future of the national data opt-out, and working closely with regions to understand local needs.
We will work with local health and care systems and partners including integrated care systems, including co-designing regional engagement, to make sure that we understand the needs, concerns and opportunities for different communities across England.
We will work with the public, the expert advisory group, the National Data Guardian and other stakeholders to ensure that we have a simple opt-out system in place that provides clarity and choice, giving patients confidence, and ensuring data continues to support the functioning of the health and care system.
We will improve access to GP records in the NHS App by giving patients access to their latest health information (November 2022) and provide patients with the ability to digitally request historic coded information, including diagnosis, blood test results and immunisations.
We will continue to develop the NHS App so that 75% of the adult population will be registered to use the NHS App and NHS website, and content and services produced on these national channels will be tailored to a person’s needs and choices, making it easy to self-serve and provide choice in the ways they interact with us.
We will continue to support local systems to roll out shared care records across England (subject to HM Treasury approval), providing the necessary data and API infrastructure to enable the public to access their records through national and local solutions.
Giving health and care professionals the information they need to provide the best possible care
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We will improve information governance guidance so staff are confident in sharing individuals’ data for their care, including publishing the Information Governance Framework for Integrated Health and Care: Shared Care Records.
We will action the findings of the user research to embed the information governance portal as the one-stop shop for help and guidance, as evidenced by an increase in the number of visits to the online portal.
Working with the Health and Care Information Governance Panel, we will create fit-for-purpose rules around different types of data (such as pseudonymised), so that staff can clearly understand them, addressing concerns around pseudonymised data as raised by the Goldacre review.
We will develop a national information governance transformation plan, focusing on practical data-sharing situations, creating professional standards and addressing training for frontline staff.
We will establish a head of profession to ensure the development of competency frameworks, standards, job families and appropriate professional accreditation for information governance staff working in health and care.
We will lead the development and implementation of information governance as part of a multi-disciplinary function for informatics and champion the work of information governance professionals.
We will review the Data Security and Protection Toolkit and its language to bring it into line with our work to simplify information governance.
We will introduce a statutory power to enable health and adult social care public bodies to require anonymous information that relates to the provision of health and adult social care services in England.
We will ensure that each integrated care system has a basic shared care record in place to enable sharing of key information between GP practices and NHS trusts.
We will support every integrated care system to ensure that all organisations are able to access a shared care record that meets the requirements set out in the standards roadmap, enabling individuals, their approved caregivers and their care team to view and contribute to the record.
We will have in place a system-wide target for the rationalisation of data collections to reduce the time spent by health and care staff inputting and processing data for national use.
UKHSA will put FAIR (findability, accessibility, interoperability and reusability) principles at the heart of its data strategy, designing institutional capabilities and processes that reduce burdens on public health system stakeholders while responding to user needs.
We will scale up our digital home care projects to support 600,000 members of the public with care at home, including those resident in care homes, improving their health outcomes.
We will continue to pursue the collection of pseudonymised client-level data rather than aggregate data from local authorities as set out in the adult social care reform white paper. This will ensure we have regular and comprehensive data to enable person-centred, sustainable innovation for adult social care.
We will use the NHS number to ensure data can be appropriately linked and plan to make client-level data collection mandatory with all local authorities expected to commence data flows by 2023 to 2024.
We will develop an easily accessible data-sharing solution with local authorities and providers over the next 3 years that supports real-time decision-making at local, regional and national levels, building on the learning from the pandemic, and seek to ensure different actors in the system have access to the same rich data sets.
We will develop, in collaboration with Skills for Care, a digital skills framework that will support the improvement of the digital capabilities of everyone working in the adult social care sector (phase one completed March 2022), supported by the delivery of an inclusive approach to training opportunities to improve the data and digital literacy of the adult social care workforce from April 2022.
We will ensure that at least 80% of social care providers have a digitised care record in place that can be connected to a shared care record and we will reinforce the use of the NHS number universally across adult social care to support this.
We will introduce a power to require information from all adult social care providers (both public and private), so that we can build a better picture of the delivery of adult social care services across England.
We will establish a data framework for adult social care
We will continue to promote NHSmail – or other appropriate services that meet the government’s secure email policy requirements – to all providers to enable secure information-sharing, and will work with the sector to identify a long-term and sustainable approach.
We will work with our partners to evaluate the impact of the solutions currently in place for access to primary care data – for example, the recent expansion of a restricted view of GP Connect to specific community and social care staff. Over the next year, we will explore further options for appropriate access to information to deliver high-quality care.
We will publish a standards and capabilities roadmap for digital social care record solutions (completed May 2022), which assured suppliers providing digital social care records are required to comply with. Its development will be co-designed with the adult social care sector, and will include data and reporting standards that will allow providers and commissioners across the NHS and adult social care sector to access information. This will begin by developing a process to consolidate existing social care terminology standards.
We will work with the telecare sector ahead of the telecoms industry-led transition from analogue to digital phone lines by 2025, and issue an action plan to support those who commission, deliver and supply telecare services and equipment.
We will support care providers in adopting proven technologies that can transform quality of care and safety, and fund implementation support within each integrated care system to rapidly digitise social care as set out in the white paper People at the Heart of Care.
Supporting local and national decision-makers with data
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Social care records will be integrated into local shared care records within 6 months of a provider’s digital system going live – based on current forecasts for digital roll-out, this will mean 80% of providers will be integrated.
We will develop a workforce observatory, including an annual census, to inform how to better harness the professional skills of analysts and data managers, engineers and scientists, and support their professional learning and development.
We will develop an online Analytics Hub, working with AnalystX, to share, promote and endorse training, events and other resources aimed at analysts and non-analysts across all career levels.
We will grow the AnalystX community and build the team of future analytical leaders through a champions programme.
We will continue to encourage innovation and collaborative working through a data and analytics accelerator by promoting the use of open data, and working with a plurality of solutions and teams. The principles of the accelerator will be tested through hackathons and real business cases.
We will develop and roll out a unified set of competency frameworks aligned to the government analysis function skills, and the digital, data and technology profession.
Through the Developing Data and Analysis as a Profession Board, we will:
agree frameworks, guidelines and policies to support the analytical community and address the concerns raised in the Goldacre review
build the ecosystem of the profession through communities of practice (local, regional, national and virtual)
signpost and provide development opportunities for analysts in both health and social care
We will initiate a national pilot on improving care co-ordination via the Improving Care Coordination for Patients programme.
We will be able to showcase replicable archetypes of national data and analytics technology infrastructure based on the maturity of integrated care systems.
We will have a federated data platform that will provide the connectivity needed to transform care and improve outcomes for patients.
We will begin to make new source code that we produce or commission open and reusable by default (with clear exceptions) and publish it under appropriate licences to encourage further innovation (such as MIT and OGLv3, alongside suitable open data sets or dummy data). Subject to consultation, the relevant policies will also aim to be open and reusable.
We will consult with the UKRI and NIHR to consider how outputs from research they fund involving health and care data can follow open and reusable code principles.
We will amend the 2002 COPI regulations to ensure that they facilitate timely and proportionate sharing of data, engaging with stakeholders and the public by the end of 2022 to make sure that changes are implemented transparently.
We will, as part of the forthcoming health disparities white paper, set out the role that data – and data improvement initiatives – must play in government’s overarching approach to reducing the gap in health outcomes between different places and communities across the country.
We will ensure that, as we implement this data strategy, all commitments are assessed against their impacts on improving understanding of and ability to act on tackling health disparities and ill-health.
We will, as part of the forthcoming Women’s Health Strategy, explore how data can be used to improve insights for women’s health by making better use of data collected from heath and care services.
DfE, DHSC, DLUHC and the Home Office will work together to identify enablers of appropriate information-sharing by professionals working with children and families, such as consistent identifiers, improved standards and guidance.
DfE will publish a report setting out the government’s policy on information-sharing to safeguard children, including considerations of issues around applying a consistent child identifier.
DHSC will work with the DLUHC deliver improved guidance for local partnerships delivering the Supporting Families programme that will support appropriate and safe local data-sharing to safeguard and support families, and prevent problems from escalating.
Our public health agencies will draw on multiple data sources to gain new insights into the public’s health, with quicker access to high-quality health intelligence to inform improved decision-making and responses to threats to health.
Empowering researchers with the data they need to develop life-changing treatments, diagnostics, models of care and insights
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We will create partnerships between academic researchers, charities, patient advocacy groups, industry and analytical teams to enhance the exchange of skills and knowledge.
We will work with expert partners and the public to implement secure data environments as a default across the NHS. We will do this by delivering:
a clear public guide to secure data environments and our overarching policy guidelines for the use of secure data environments
a robust accreditation regime to ensure our high standards for secure data environments are implemented. This will include not only accreditation requirements for secure data environments, but also guidance and oversight on users of the environment, as well as the process to monitor and assess implementation
a full technical specification, drawing on industry best practice, including requirements to ensure interoperability, cyber security and the use of privacy-enhancing technologies
a comprehensive roadmap to ensure all partners across the system know how to implement our framework, with clear indicative timescales and expectations for those at different readiness levels. This will include not only those delivering the transformation in the NHS, but also software providers, academic and industry researchers, as well as funding agencies
We will create clarity on terminology and legal definitions, working with the research community to alleviate confusion and improve the quality of research access requests.
We will create at-scale data sets that bring together the different types of health data to develop new tools for prevention, diagnostics and clinical decision support through the Data for Research and Development programme.
We will bring together genomics data, and work with NHSEI to ensure genomic data generated through clinical care is fed back into patients’ records.
We will build on platforms such as NHS DigiTrials to support the best use of data and digital tools in study feasibility, identification and monitoring of research participants to enable faster, more efficient and effective clinical trials.
We will publish a 2021 to 2022 implementation plan (complete) followed by a 2022 to 2025 implementation plan to progress UK priorities for clinical research as set out in the Future of Clinical Research Delivery, including a theme on research enabled by data and digital tools.
We will convene a UK-wide genomic data working group with representation from experts across the UK’s genomic healthcare landscape to provide a forum for co-ordination and collaboration, and to ensure that our processes maintain public trust in the safe, appropriate and responsible use of personal data for both clinical care and research.
We will work with other countries and the World Health Organization (WHO) to facilitate the implementation of the World Health Assembly resolution on strengthening clinical trials to provide high-quality evidence on health interventions and to improve research quality and coordination, and supporting, as appropriate, the development of a WHO progress report by the 76th World Health Assembly.
Working with partners to develop innovations that improve health and care
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We will publish a digital playbook on how to open source your code for health and care organisations. Guidance on where to put the code, how to license and maintain it, and best practice for working with suppliers will be published in addition to case studies of teams who have done this.
We will undertake further work on using data to improve health outcomes and reduce health disparities, including through the AI Ethics Initiative. The initiative will report in 2023 to 2024 on its joint research call with the Health Foundation exploring how to use AI-driven technologies to improve health outcomes for ethnic minority populations in the UK.
We will develop unified standards for the efficacy and safety testing of AI solutions, working with MHRA and NICE.
We will optimise the regulatory process through the creation of a Multi Agency Advisory Service.
We will make up to £100 million of funding available through the AI in Health and Care Award to accelerate the testing and evaluation of AI technologies.
We will help regulators develop fit-for-purpose regulations that are easy for the market to navigate, including approaches for the health and care sector to validate AI technologies, and recommendations on the use of synthetic data sets.
We will agree a target data architecture for health and social care outlining how and where data will be stored and accessed, starting with health (July 2022) and then followed by social care (September 2022).
We will publish the NHS Cloud Strategy, Principles and Policies to establish a more standardised and optimised approach to cloud adoption throughout the NHS.
We will deliver a target state that considers environmental impact through our cloud migration, and use of strategic cloud suppliers who have credible sustainability targets and roadmaps.
We will map the technical debt for national systems, and prioritise what must be addressed and completed through relevant programmes of work.
We will provide services to find and retrieve records from wherever they are created across health and social care.
We will improve our integration approach to scale APIs already being used by the market starting with elective care.
We will improve the process of onboarding to national systems to increase uptake of national services and products such as the NHS number.
We will develop the roadmap for core NHS services using cloud technologies where appropriate.
We will build centres of excellence in the area of data architecture that focus on promoting best practice, support and training.
We will enhance the NHS service standard to provide more information on the right tools and technology that can be used to develop products and services.
We will develop and publish the draft standards and interoperability strategy to get fit-for-purpose standards widely adopted across health and adult social care, reusing and building on international standards where relevant.
We will introduce a power for the Secretary of State for Health and Social Care to mandate standards for how information is collected and stored, so that information flows through the system in a useable way. This will make sure that when information is accessed or provided (for whatever purpose), it is in a standard form, both readable by and consistently meaningful to the user or recipient.
We will publish and maintain a standards roadmap, working with vendors and procurement frameworks to ensure effective implementation.
We will develop a focused core of UK-wide FHIR profiles to be a stable foundation for new standards.
We will develop a portal to improve the visibility, clarity and accessibility of existing and future interoperability standards, enabling us to monitor adoption and support compliance, and promote collaboration and co-design, making it easier to find and contribute to standards development.
We will provide leaders with the data they need to understand their organisation’s cyber risk status.
We will work with the MHRA, NHS Digital and NCSC through the Connected Medical Device Security Steering Group to proactively identify the risks around connected medical devices across the health and care system.
We will ensure backup reviews are completed for target organisations and, where needed, remediation plans are in place.
We will engage with the system to develop the cyber security strategy for health and care, which we will publish later this year to help drive collective effort from all parts of the health and social care system.
We will triple the number of adult social care providers completing the Data Security and Protection Toolkit to at least ‘approaching standards’ status, an increase from 14.3% to 43%.
We will set clear cyber standards for health and care organisations and suppliers, annually reviewing and publishing standards in the mandatory Data Security and Protection Toolkit.
We will deliver at least 3 incident response exercises with national and local bodies.
We will establish 4 cloud exemplar sites across health and social care to store and utilise the data in the cloud.
We will build upon the work done in integrated care system target architecture to provide the reference architecture to support the integrated care systems.
We will develop the data orchestration layer and metadata catalogue that allows the data discovery and data flows supported by the APIs across the data sources in the health and social care system.
We will establish the exemplar data flows allowing multiple patterns including query or response, publish or subscribe, and automated alerting to support real-time data usage in the health and social care system.
We will develop data standards and supporting processes based upon the reusable clinical models rather than based upon the care settings type.