The Department of Health and Social Care has published a new strategy entitled “Data saves lives: reshaping health and social care with data”.
It sets out the department’s vision for how data will be used to improve care for the population in a safe, trusted and transparent way, providing an overarching narrative and action plan to address existing barriers and marking the next steps for discussion on how data can be best utilised for the benefit of patients, service users, and the system as a whole.
Improving trust in the health and care system’s use of data
Moving on, the strategy shares its first vision: “the public will have confidence in how their data will be handled, and are happy for their data to be used to improve the care that they and others receive.”
It states: “In this strategy, which differs from the draft we published last year, we are putting public trust and confidence front and centre of the safe use and access to health and social care data. The data we talk about is not an abstract thing: there is an individual, a person, a name behind each piece of data. That demands the highest level of confidence. It is their data that we hold in trust and, in return, promise to use safely to provide high-quality care, help improve our NHS and adult social care, develop new treatments, and, as a result, save lives.”
HTN covered last year’s draft here.
Demonstrating that the health and care system is a “trustworthy data custodian” will be done in five ways: by keeping data safe and secure; being open about how data is used; ensuring fair terms from data partnerships; giving the public a bigger say in how data is used; and improving the public’s access to their own data.
Public trust will be built through use of new privacy-enhancing technologies such as federated analytics, homomorphic encryption, differentially private algorithms and synthetic data.
“Most importantly”, the strategy adds, “we will establish secure data environments as the default route for NHS and adult social care organisations to provide access to their de-identified data for research and analysis.”
The strategy highlights that openness about how data is used is key for building trust, noting that the importance of transparency was one of the key findings in the Office for Statistics Regulation’s report on lessons learned from the pandemic. “We will explain more clearly how data is being used across the health and care system,” the strategy says. “We need to make clear to the public about how and why data is used. We need to build a broader understanding of how data can help us support individual care, how the system works, and how we develop new ways to improve everyone’s care.” This includes establishing a data pact with the public for the first time, which will set out how data will be used and what the public has a right to expect, and will be in place by December 2022.
Ensuring fair terms for data partnerships is the next topic to be covered, with the strategy describing how these partnerships are essential between health and care partners, charities, academia or industry organisations. Five principles have been developed for these partnerships, including ensuring that the data has explicit aims, organisational responsibility and fair terms, ensuring that arrangements do not undermine, inhibit of impact the NHS at a national level, transparency and communication, and adherence to all legal, regulatory, privacy and security obligations.
The public must be given a bigger say of how data is accessed and used. The strategy states that a “2-way conversation” must be built, “where we take the time to explain in accessible language how and why data could be used, and then we listen to the public’s views and act on their feedback.”
Giving health and care professionals the information they need to provide the best possible care
The vision here is to ensure that “staff will have easy access to the right information to provide the best possible care”, to support “more accurate diagnoses, understanding their preferences to offer more personalised care [and] keeping them safe.”
Simplifying and transforming information governance is key. The strategy notes that research confirmed frontline staff’s concerns about potential repercussions of a mistake or breach and require guidance to be extremely concise and unambiguous.
“We need to change the experience of those who work in information governance and those who work with information governance so they perceive it as integral to excellent care,” the strategy states. It adds that it will accomplish this change by “influencing and creating a more dynamic, credible and professional workforce”, “championing the appropriate use of information to make a difference in setting competencies” and “reviewing the skills and knowledge required, putting in place career paths, and creating communities of practice to rebuild a credible and self-respecting profession.”
In real terms, this means giving staff “clear, simple guidance on what information they can access, who they can give access to, and for what purpose”. It means multi-disciplinary teams working together to achieve this aim, with staff receiving training on information governance throughout their careers.
Information needs to be shared appropriately for the benefit of users and the running of the system as a whole. The strategy sets out an ambition to “introduce a new power allowing health and social care organisations to require anonymous information from each other and from commissioned private providers. This will help to ensure that anonymous information will be more effectively and seamlessly shared across the system.” In addition, a power “to make regulations setting out exceptions to the requirement to provide anonymous information” will be introduced, to take into account the need to protect commercially sensitive information and to minimise the burden on providers.
Delivering shared records is also key. The strategy states that the shared care records programme is to be extended, “working towards comprehensive record-sharing by 2024” whilst also working to “make the data categories captured within the shared care record responsive to need”.
When it comes to reducing the data collection burden, the strategy highlights how an understanding of where the NHS already has the right amount of data collection will help to prioritise areas where data is urgently needed, eliminating duplication and saving unnecessary costs. The new Data Alliance Partnership, consisting of organisations across health and social care, is focused on minimising the burden of data collection, with their work including the setting of measurable targets, encouraging data sharing and building an architecture that reduces the burden over time.
Improving data for adult social care
For this topic, the vision is that “members of the public and their care teams will have access to timely, high-quality data to improve care quality and inform choices about their care and support.”
At present, the strategy notes, few adult social care providers have online access to information about the individuals in their care. It states 45 percent of providers use a digital social care record, with research published in December 2021 indicating that 23 percent of care home staff could not access the internet consistently at work, and 45 percent of providers expressing concern that care staff lacked digital skills.
“We will work with the sector to help providers, including those at the beginning of their digital journey, to improve their internet connections and access to devices,” the strategy states. “We will also deliver a comprehensive learning offer so that care staff have the confidence and skills to use digital tools to provide outstanding care.” This will see the development of a digital skills framework to improve the digital capabilities of everyone working in the adult social care sector.
In addition, an easily accessible data-sharing solution will be developed with local authorities and providers over the next three years to support real-time decision-making at local, regional and national levels. The strategy also emphasises the need to continue pursuing the collection of “pseudonymised client-level data rather than aggregate data from local authorities”, to “ensure we have regular and comprehensive data to enable person-centred, sustainable innovation for adult social care.”
The strategy moves on to discuss the integration of health and social care data, commenting that to ensure better integration, “we want to make sure that data is only collected once and flows better across health and social care so that services can meet the needs of users without multiple conversations.”
It shares how the government are “developing plans to support the adoption of digital social care records and proven care technologies that can reduce escalation of care needs”, highlighting that the development of integrated care systems (ICSs) “provides an opportunity to bring together data and knowledge to deliver improved outcomes for and co-ordinate care around individuals.”
Additionally, the approach to gathering individual consent to access data stored in digital social care records is set to be standardised, so that anyone registering with a provider can determine who their data is accessed by.
Next, the strategy explores the use of data from care technologies, emphasising that “greater digitisation of social care will give the public a more seamless experience of the health and care system.” It will also provide individuals with greater insight into their own needs and support them to live independently at home for longer, sharing “compelling” examples of the data from assistive technologies such as room sensors, activity monitors and alarm systems, which can provide carers and families with reassurance.
The strategy lays out a commitment to work with a range of partners “to focus on the challenges and opportunities that will have the greatest impact in driving digital transformation in social care”, establishing at the outset “how the data generated can be accessed and used to improve the quality of care.”
Data will be used to build evidence for the adult social sector as a whole to support wider adoption and scale of successful care technologies within more settings.
“We will continue to work with the social care sector through integrated care systems and local authorities to support the use of care tech and approaches to commissioning innovation,” the strategy says. “We will test and learn from digital initiatives, scaling those that have proven effective.”
Supporting local and national decision-makers with data
Here the strategy shares a vision that “leaders and policymakers in every community will have up-to-date sophisticated data to make effective decisions, and help the health and care system run at its best.”
This section covers a variety of key topics:
- Integrating local care systems with a culture of interoperability by default, in order to ensure that decisions can be make quickly, responsively and safely, with personalised services tailored to need and fewer unnecessary interventions. This will be done by creating a more co-ordinated approach with ICSs at the heart of it; ICSs will lead on deciding how their data benefits their populations, working with local government, third-sector partners, social care providers and the wider healthcare system to address long-term challenges.
- Building analytical and data science, management and engineering capability by replacing traditionally high-effort, low-value processes with analytical approaches such as machine learning and natural language processing in order to improve decision-making, policy-making and performance management.
- Improving the data analytics ecosystem through developing a good data and analytics ecosystem, supported by technology infrastructure, so that data collection can be streamlined, analytics can be rapidly developed and shared across ICSs, ICS data control can be maintained and provider data can be made accessible and visible to local, regional and national bodies for improved operational planning.
- Working in the open by encouraging analysts and developers to think from the start how a project can be shared, considering using open notebook science and sharing technical skills and domain knowledge, with the strategy setting out a plan to develop an open analytics policy.
- Providing access to data for wider purposes through amending 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.”
- Reducing health and care disparities by ensuring that all commitments in the data strategy are assessed against their impact on improving understanding of and ability to tackle health disparities.
- Keeping children safe and healthy by providing professionals with broader, real-time data to help them care for children and families and providing national support to ensure that existing services implement best practice with regards to data, for the benefit of children using the services.
- Collaborating with devolved administrations by drawing on multiple data sources to gain new insights into public 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
The vision is that “researchers will be able to safely and easily access data to provide innovative solutions to health and care issues for the benefit of all.”
This means providing safe and secure data for analysis and research. The strategy states that “the system will increasingly look to secure data environments where researchers and analysts can access sensitive data without breaching privacy. In-depth analysis can be undertaken on rich data sets without identifiable information ever being seen by researchers and analysts.”
It notes that the Goldacre review recommends adopting trusted research environments to ensure the safety of the public’s confidential data, whilst also allowing professionals reasonable access for research. To enable this, the strategy includes 11 drafted guidelines for secure data environments. The guidelines cover issues such as maintaining a standardised approach, the need for secure data environments to demonstrate how they meet criteria set out in an accreditation framework, and the need to maintain the highest level of cyber security.
In terms of encouraging the use of data for research, the strategy highlights how the Data for Research and Development programme is investing up to £200 million in NHS data infrastucture, subject to HM Treasury approval. This will make research-ready data available in a streamlined and secure way. “This investment in data infrastructure will enable widespread use of NHS data in driving insight to support population health, resource planning, clinical research [and] health-improving innovations,” the strategy says.
The strategy acknowledges the need to improve the accessibility of high-quality data to support clinical research and data-driven innovation. “We will deliver more efficient and effective clinical trials by ensuring data is used to support design, recruitment and follow-up,” it states. “This will reduce unnecessary burdens on the frontline workforce and ensure as many members of the public as possible have access to trials that might benefit them.”
Working with partners to develop innovations that improve health and care
This vision states: “Innovators will be supported to develop and deliver new solutions quickly and safely for the benefit of all citizens, staff and the system.”
Driving interoperability for innovation is key here; “our new standards registry will be open source and documented on our GitHub page to enable and encourage feedback, suggestions and collaboration,” the strategy says. “We will explore ways in which we can signpost or host reference implementations, guidance and best practice around interoperability interfaces to share learning among digital health communities and accelerate standards adoption.”
Encouraging artificial innovation is also seen as key. “The AI in Health and Care Award made funds available to support innovators and technologies across the full spectrum of development, from initial feasibility to NHS adoption and testing within clinical pathways,” the strategy states, noting that, “AI technologies have real potential to improve the delivery of health and care services by analysing large quantities of complex information.”
The strategy goes on to share how steps are being taken to help local NHS organisations become “stronger buyers and more informed consumers of data-driven tools and services.”
It adds that “the size and structure of the health and care system also means that, to scale solutions, you would have to work with multiple organisations” and says that in order to simplify this, work across information governance and standards includes issuing clear guidance for data protection rules for data-driven technologies, providing open standards for interoperability so developers know how to build for the health and social care system, and working with vendors, suppliers, developers and the open-source community to ensure that standards are realistic, do not overburden, and do not display favouritism to specific suppliers.
Developing the right technical infrastructure
We come to the final vision the strategy: “we will ensure the data architecture underpinning the health and care system can easily work together to make more effective and efficient use of data.”
Existing data architecture needs to be modernised, with the Topol Review indicating that between 15 and 70 percent of a clinician’s working time can be spent on administration rather than caring for patients.
“We must use the best technologies to support our staff with their work as well as using the data by clinicians for making effective decisions using AI, machine learning and advanced analytics,” the strategy says. “We will do this by providing more support and direction to IT systems providers on the appropriate platforms and systems they should use to access data most effectively. We will also build capability to effectively integrate AI and machine learning innovations into service delivery, in areas such as clinical imaging and workflow automation.”
The strategy highlights the importance of promoting and developing data and technical standards, with multiple benefits available such as improving patient safety by reducing errors from re-entering information across systems, enabling better care by making the relevant data available when needed, and support innovation by giving providers choice.
Cyber security must also be taken into account. “We must maintain public trust in the cyber security of the health and adult social care sector, providing safe and secure access to data with confidence, and enabling innovative data-driven technologies that can improve the quality and outcomes of care,” the strategy says. It highlights commitments to assist with this, including setting clear cyber standards which will be annually reviewed, and tripling the number of adult social care providers completing the Data Security. andProtection Toolkit.
The last topic to be covered in the strategy is creating the target data architecture, which will be created to support four actions: effective data infrastructure using cloud technologies, improving access to data via APIs and open standards, improving uses of the data including AI, machine learning and advanced analytics, and providing individuals with access and control over their data. To achieve this, work is underway such as developing the data orchestration layer and metadata catalogue, establishing exemplar data flows, and developing data standards and supporting processes based on reusable clinical models.
To read the strategy in full, please click here.
