Data Saves Lives Implementation Update

Introduction

In June 2022, together with the Department for Health and Social Care (DHSC), NHS England published Data Saves Lives: the data strategy for health and social care, setting out our future plans for data, building on lessons learned about the power of data from COVID-19. We published Data Saves Lives alongside A Plan for Digital Health and Social Care, which set out a vision and plan for digitally-transformed health and social care services. The Data Strategy also included our formal response to the review led by Dr Ben Goldacre to improve the efficient and safe use of health data for research and analysis. In our response, DHSC set out where recommendations were being acted on as part of delivery of the Data Saves Lives strategy. Through this, we showed that actions were in place against 26 out of 30 of the Review’s summary recommendations, in particular our work to implement Secure Data Environments across the NHS in England.

June 2023 marks one year from publication of the Data Strategy. This anniversary provides an opportunity for the first of our progress updates.

The strategy set out the Secretary of State’s vision for how data will transform the health and care system - underpinned by 102 clear commitments, across seven chapters, in four strategic areas for action on data and data access:

• improving patient and service users experience and access
• getting the right systems in place
• supporting staff and boosting efficiency
• commitments specifically targeting adult social care

The power of data for the future of health and care delivery is clear and compelling and has been the driver for completion of over half of the commitments since publication. We are continuing to deliver on our remaining commitments to maximise this potential. At the start of our implementation journey, we established the National Data Advisory Group to provide guidance, advice, and challenge on our delivery approach, including engagement and transparency. This independent group of stakeholders will continue to support and advise us as we deliver on our remaining commitments.

There is a lot left to do. But we remain enthusiastic about the potential of data to improve services and save lives.

Improving experience and access for patients and people

The Data Strategy set out a vision that the public will have greater access to their own health and care data, and the power to choose how it’s used. We have delivered capability that we continue to improve in a number of key areas.

NHS App

The NHS App is at the centre of this mission. Through the NHS App the public can view their GP records, vaccinations and prescriptions. As of May 2023, there have been 32.3 million registered sign-ups to the NHS App (equivalent to just under 73% of the adult population) meaning that we are already close to our target of 75% by March 2024. As expected, the pace of uptake is slowing, and more needs to be done to reach a wider range of groups. We are undertaking work to monitor demographic usage of the NHS App as we are keen to drive take-up and usage across all sectors of society. As well as increasing overall usage of the NHS App, we are continuing to increase its functionality. For example, helping patients understand and act on information in their GP record, including test results, and allow patients to nominate a proxy who can access their records on the App. One in four patients now have online access to their new health record information, but by 31 October this year this should be provided to all patients unless they have individually opted-out or any exemptions apply.

Shared Care Records

By giving staff systems that provide quick and easy access to information about the individuals in their care, whether they have been treated in health or care settings, we ultimately improve the overall experience of patients and people. To support direct individual care, our shared care records programme aims to bring together data from primary care, secondary care, and social care to join up patient information at the level of the individual rather than the organisation. Our near-term aspiration is to have all critical elements of a person’s health and social records accessible to any authorised health and care professional in the country who is involved in their care.

Shared care records allow the sharing of information across traditional care boundaries. Since the publication of Data Saves Lives, we have hit an important milestone - with all 42 Integrated Care Systems now having a basic shared care record in place.

Over the next few years, the priority focus will be to develop each record to improve its overall utility, building on exemplars such as the Great North Care Record and London Care Record. We also remain committed to providing some level of patient access to the shared care record by December 2025.

Public trust, transparency and engagement

As part of feedback on the draft version of Data Saves Lives, we heard clearly from stakeholders and the public that more needs to be done to improve public trust and transparency. That’s why we dedicated a full chapter to this in the final version. We also made several commitments about how we would build public confidence, some of which have been achieved such as establishing the National Data Advisory Group and running various regional engagements with the public including supporting 11 sub-national secure data environments teams to do engagement work with their local populations on topics such as governance, access, safeguards and controls.

One of the key products aimed at building public trust is a new Data Pact, which had an ambitious target date of December 2022. After taking advice from the Advisory Group, we are undertaking this work at a slower pace, but jointly with the public – so that it’s genuinely co-designed. We have worked with the Patient’s Association to deliver a set of focus groups to inform our development of this Pact – for example setting out in simple terms how data is used and what the public have the right to expect. We will undertake further engagement on the Pact later this year.

Another key product is the standard for public engagement, which we’ve been working with the Public Engagement in Data Research Initiative (PEDRI) to develop. The draft standard was published in May 2023, with a four-week public consultation period ending on 30 June 2023. We will continue to work with the PEDRI group to refine and develop the standard and embed the best practice across the system.

Public engagement will remain an important strand of our work, including for key programmes such as the Federated Data Platform, Secure Data Environments and GP Data for Planning and Research (GPDPR).

The GPDPR programme continues to learn and engage, publishing its work as it develops. We hold a regular formal stakeholder group, a patient engagement panel and have conducted a series of qualitative and quantitative research and engagement projects. This learning contributes to finding the best solutions to build public trust and support responsible access to GP data, enabling us to improve health outcomes, plan better services and develop new treatments and understanding of disease.

National Data Opt-Out

It’s important that people have a clear choice on how their data is used. We remain committed to providing the public with the ability to opt-out. As part of that, we are reviewing the National Data Opt-Out to ensure it remains a trusted tool for the public to have a say on how their data is used. We have had initial discussions with the National Data Advisory Group and the Confidentiality Advisory Group on next steps. The opt-out will be a priority topic for discussion with the public in our large-scale public engagement events, planned for later this year.

Getting the right systems in place

Data holds so much potential for our health and care system, but we can only unlock this if we have the right technical infrastructure in place.

Federated Data Platform

At the centre of this is the Federated Data Platform which is being procured by NHS England underpinned and guided by an agreed technical architecture. The Platform will be a vehicle to initiate a more connected and more efficient system, and ultimately means a better service for patients / service users by:

• connecting teams and organisations that need to work together to provide patient care
• helping local teams better prioritise waiting lists, manage theatre capacity and identify their staffing needs
• helping local health and care teams to understand the health of their local populations, and what services might best support them
• making it easier to see where critical supplies are, how much is available, and spot and prevent potential shortages
• helping local innovations be scaled-up and shared via the ‘marketplace’
• reducing the reporting burden on frontline staff

An open, competitive procurement process for the Federated Data Platform launched on 10 January 2023 and is expected to conclude later this year. NHS England has published further information about the FDP and the procurement process.

Privacy Enhancing Technologies

In addition to the data platform, NHS England is investing in Privacy Enhancing Technologies (PET) referenced in Data Saves Lives. This is a technical method that protects the privacy and confidentiality of sensitive information. PET will be a standalone service that will provide data protection to FDP and local data stores.

Secure Data Environments

Beyond direct care, NHS and social care data drives research and innovation. Our commitment to move to a system of 'data access as default' for the secondary uses of NHS data (for example research and external uses) is changing how NHS data is made available. This is facilitated by the implementation of Secure Data Environments. We are moving away from sending data to researchers, as Secure Data Environments allow approved users to view and analyse NHS data without it having to leave the environment, upholding the highest standards of privacy and security.

A key part of better protecting data – and keeping it secure in our systems – is the move to Secure Data Environments, where approved users can access data in a safe environment (a key way we will be supporting the more effective use of data). In September 2022, we published 12 policy guidelines for Secure Data Environments, which set out the principles that organisations providing access to NHS and social care data for secondary uses will need to adhere to. In May 2023, we built on these guidelines and published a draft data access policy update. This update provides further clarity on the transition to data access, while acknowledging that we do not have all the answers at this stage. By taking a phased and incremental approach we are committing to learn, listen and work transparently and publicly as we develop data access policy.

The move to data access for health and social care data is a change that will bring benefits to researchers, patients, industry and wider society. The Data for Research & Development programme is investing in an interoperable NHS Research Secure Data Environment Network to provide safe and secure access to NHS data for research, supporting rapid innovations, enhancing patient care and improving health outcomes.

We remain committed to establishing a robust accreditation regime for Secure Data Environments that provide access to NHS data, to ensure that the highest standards of privacy and security are being met. To deliver on this commitment, work is underway with the UK Statistics Authority to co-design a new, amended version of their accreditation framework to be fit for purpose for the NHS Research SDE Network, ensuring there is an appropriate legal basis. Accreditation of the Network will ensure transparency and accountability to the public of how NHS data is accessed and used for research and external uses, while ensuring a high-quality, consistent experience for users.

Data Architecture

As a key part of the Data Saves Lives vision, we aimed to simplify and unify the national data architecture to help those in the system to have a clearer understanding of - and better experience when - accessing and linking data. This objective was centred around a commitment to outline a target data architecture for both health and social care, which we published as part of our Who Does What guidance. This year, we’re working closely with Integrated Care Boards to establish and implement this target architecture.

Cloud computing forms an increasingly important part of that architecture, given the flexibility and capacity it can provide. As we look to migrate services to the Cloud, we want to learn from best practice and have established four adopter sites across the country: Dudley Group, South West London ICS, Bridgewater Community and one within NHS England.

Standards and interoperability are fundamental to joining up person-centred care, so that the right information is available at the right time for those who need it. In the last year, significant progress has been made in this area. This includes the publication of the digital playbooks, a series of different examples demonstrating how open-source approaches to code, community, governance and documentation can help health and care organisation develop and promote their work. This includes implementing, licencing and maintaining code. In addition, we have developed a searchable directory of published and future interoperability standards to make it easier for health and care organisations and vendors to find standards to record, handle and exchange data.

As set out in the strategy, we have taken powers in the Health and Care Act 2022 to mandate standards for how information is collected and stored, so that information flows through the system in a usable way. We are using the Data Protection and Digital Information Bill, currently before Parliament, to extend the application of these to include providers of IT products and services used in connection with the provision of health and adult social care.

Supporting staff and boosting efficiency

A key part of the strategy is helping staff who work in the system to feel more confident and empowered when using health and care data.

Information governance

One of the most effective methods we have of shifting culture and upskilling staff is through clear guidance. The Information Governance Portal is the one-stop shop for information governance guidance, and we continue to publish clear and practical advice for patients, health and care professionals and IG professionals. This includes the Information Governance Framework for Integrated Health and Care, which provides specific guidance on shared care records. It’s important that our guidance is simple and understandable. That’s why we have updated the Data Security and Protection Toolkit to bring the language into line with our wider push to simplify information governance. In adult social care, we achieved our commitment to triple the number of adult social care providers completing the Data Security and Protection Toolkit to at least ‘approaching standards’ status (58%) and this percentage continues to rise.

We have also finalised an initial Information Governance Transformation Plan. This will help develop a professional workforce with the skills, career paths, qualifications, support, and culture needed to build a credible and confident profession. We will continue to champion the appropriate use of information and a delivery focused, problem-solving approach.

The plan remains for NHS England to create and issue fit-for-purpose rules around different types of data, such as pseudonymised and anonymised. However, we must await the ICO guidance on anonymisation before this can be issued to the system.

Cyber-security

In Data Saves Lives, we committed to publishing a sector specific strategy on cyber security, aimed at improving cyber resilience across health and adult social care. This was published in March 2023, setting out five pillars to inform the sector-wide approach to achieving cyber resilience by 2030 and in turn improving the safety of patients and service users drawing on care in an increasingly digitised sector. In the strategy, we also set out seven other cyber security commitments, including the delivery of incident response exercises, back up reviews and remediation plans in collaboration with our sector partners. All these commitments have now been completed.

Analytics

Analytical professionals working across the health and care system perform vital work giving insights from the data we collect. In Data Saves Lives we set out nine commitments to support our analytics workforce, all of which have been achieved. Examples include: the growth of the AnalystX community and the preparation of future leaders through the champion's programme. AnalystX also functions as a one stop shop for the profession, and we have published our unified set of competency frameworks there, aimed at professionalising the analytic workforce and to provide a clear career trajectory for analysts in the NHS and social care. AnalystX Population Centre of Excellence regularly run accelerator events via the FutureNHS Collaboration Platform. We continue to encourage innovation and collaborative working through this forum by promoting the use of open data, and working with a range of teams.

Commitments specifically targeting adult social care

It was made clear to us during the engagement period on the draft of Data Saves Lives that social care data should hold parity of esteem with health data. We fully agree with this and were pleased that the final strategy was well-received by social care representatives. This focus has continued and is reflected in the progress we have made on adult social care data since publication.

To respond to the commitments in Data Saves Lives, and People at the Heart of Care, in February we published the first draft of ‘Care data matters: a roadmap for better data for adult social care.

It outlines our vision to improve the quality and timeliness of adult social care data so that the sector can increase its use of data to improve the availability of high-quality care, enable more informed choices and better joined care up care for individuals.

It also sets out how we will embed the requirements of the sector into the design of national data collections to bridge data gaps whilst minimising burdens on those who provide data. And how we will improve data access to produce better insights. We are committed to engaging with stakeholders and to producing the final version of ‘Care data matters’ by the end of 2023.

Improving national data collections and bridging data gaps

We said that we would pursue the collection of client-level data (CLD), rather than aggregate data, from local authorities. From 1 April 2023 the CLD collection became mandatory for all local authorities and will replace the Short and Long-Term (SALT) collection, with SALT ceasing from 2024/25 onwards.

CLD will bring social care collections more in line with person-level NHS collections and will facilitate linking with health datasets. It will grant us access to more timely and granular data concerning an individual's care journey and their interactions across different healthcare and support settings and bring us valuable knowledge regarding the effectiveness of various interventions. This more comprehensive understanding of individuals' experiences will enable those responsible for providing care to be better informed; leading to improved experiences within the health and care system and ultimately enhancing an individual’s overall well-being.

In 2022 we established new powers in the Health and Care Act to collect data from social care providers to improve our understanding of the delivery of adult social care services across England, as well as our understanding of capacity and risk at the national level. We are working with the sector, including the CQC, to establish a minimum dataset that will reduce the burden of reporting on providers whilst also improving the quality and quantity of data collected from them.

We will increase our understanding and visibility of people in need of care and support through improved user and carer surveys. We are launching a feasibility study this summer to design a new survey for unpaid carers – aiming to collect data that will provide a more accurate estimate of the number of unpaid carers in England, as well as their lived experience. This insight will then be used to design services that can better meet the needs of carers and the people they care for.

Improving data access and insights

In February 2023, we also launched the first phase of updates to the Adult Social Care Outcomes Framework (ASCOF) following engagement with the sector. This aims to maximise ASCOF’s value at local, regional and national levels in monitoring the outcomes that matter most to people. We will continue working closely with the sector to develop a second phase of updates to ASCOF to be introduced from 2025/26, ensuring we fully utilise new data collections coming online over the next few years.

We said that we would create a tool to share data across the sector. We are about to enter into discovery for this work to ensure the product we develop meets the needs of those who will use it. After which we will create a minimum viable product for launch in 2024.

Adult Social Care sector digitisation and standards

Data Saves Lives referenced our ambitious plans to increase adoption of digital social care records (DSCRs) among CQC registered care providers in England, to improve the quality and safety of care. From a baseline of 40% adoption in December 2021, the Digitising Social Care programme has made good progress, with more than 50% of providers now using these digital systems. Our target is that 80% of providers, and over 80% of people drawing on care, will benefit from DSCRs by March 2024.

Government funding for DSCRs is only available for suppliers that meet a set of core standards and capabilities, including data, cyber security and interoperability. By January 2024 all our assured DSCR solutions will be expected to enable proportionate access to GP record information for authorised staff within providers. This functionality presents filtered views using role-based controls and helps ensure that staff have access to the information they need to provide safe and high-quality care.

To date, three of our assured DSCR solutions have successfully enabled access to GP record information for more than 3,000 staff across more than 1,000 providers. There are significant opportunities to go further in enabling information sharing between the NHS and social care.

Ensuring the right digital foundations are in place is essential to our ambitions. We continue to promote the use of NHSmail to all adult social care providers, following the completion of the DSPT, and are working with the sector to identify a longer-term and sustainable approach to information sharing.

In May, we published What Good Looks Like guidance for digital working in adult social care, which is aimed at local authorities and care providers. It provides a benchmark for organisations to aim for when digitising, ensuring that data is collected and used safely and appropriately.

Next steps in the transformation

Passing the halfway point of implementing the commitments in the Data Strategy represents a significant milestone on our journey to improve how we use data in the health and care system. The challenge ahead remains sizeable. There is significant work still to be done, but by embedding and scaling the change we have already delivered, we are gaining more momentum as we move forwards.

2023 will be a step change year for data, with the launch of the national Federated Data Platform which will run a connective thread across all areas of the system from the hospital ward, to local commissioners, to national analysts at NHS England.

As stated in the latest SDE policy update, our immediate efforts will be focussed on the transition to data access for research and external uses of NHS data. This is to support the successful delivery and accreditation of the NHS Research SDE Network.

Underpinning everything is our ability to ensure that the use we make of health and social care data has the trust and confidence of the public. This is a key priority for us and we continue to give equal focus to the commitments that we set out in Chapter 1 of Data Saves Lives as an essential part of bringing the public with us on this journey.

As we said when we published Data Saves Lives, we want to maintain a dialogue with the health and care system as we implement the strategy, this publication represents a continuation of that conversation with you and not the end. Specifically:

1. We want to know how we can better support you to implement the vision set out in the Data Strategy.
2. We're also interested in whether there is anything else, that isn't covered in the strategy, that you think would be helpful in achieving this vision.

You can share your views with us by emailing england.datasaveslives@nhs.net.