Health and care data: time to level up?

Published 28 June 2021

The government’s draft data strategy has now landed, and it is impressive in both scope and ambition. It is, however, densely packed with a huge array of commitments and mission statements. In terms of the former, there is particular focus on enabling individuals to more easily access their health records but also to ensure that health professionals have access to the data they need to take fully informed decisions about their care. More broadly, data sharing is a significant and recurring aspect of the strategy, mindful of the forthcoming changes to the NHS landscape designed very much with integration at the forefront. In this article, we look to unpack the key themes from both a patient and wider health sector perspective.  

Key messages

• At its core, the aim of the strategy is to create a more permissive environment for sharing data across and within the health and social care sectors, not only to improve the care individuals receive but also to drive the integration agenda and for the wider public benefit. To support this, the government proposes to use secondary legislation ‘in due course’ to enable the proportionate sharing of data, including, where appropriate, personal information, ‘for purposes of supporting the health and care sector (for example, for invoicing, commissioning, planning, analysis, policy development, audit and risk stratification)’ without breaching confidentiality;

• There is a recognition that there are a number of barriers to maximising the use and utility of data, both within and across organisations. They include organisational barriers arising out of the fragmented way in which health and social care is currently delivered, but also a lack of consensus amongst professionals about what can and cannot be done with data. There are a number of proposals to address this, including the development of a new framework, increased availability of e-learning as well as the establishment of a ‘one stop’ portal for help and advice.  It remains to be seen whether these resources will give professionals and organisations the confidence to use and share data more widely, particularly as they will hold the legal and regulatory responsibility for any decisions to do so;

• From a patient perspective, the government wants to make data much more accessible to them. Ideas for how to achieve this include the use of ‘personal data stores’ which would allow an individual’s data from multiple sources – for example hospitals, primary care, wearable devices, home monitoring technology - to be brought together in their own separate data store. To help turn this ambition into a reality, the government has put a timeframe of 2022 on a commitment to ensuring that the technology is in place to give everyone in England easy access to their own data; and

• As an overall observation, much is made of the capacity for data to save lives and the need to ensure that the positive strides made during the pandemic in respect of data quality and availability to those who need it are not lost. In broad terms this is clearly a laudable and logical aim, but it will be interesting to see whether the public discourse and acceptance of wider sharing and use of their data will remain as supportive as it, largely, has been in the context of a deadly pandemic.

Impact for particular groups

The government’s vision for the future is structured around the impact of the proposed changes for particular groups (particularly patients, frontline staff, policy-makers, researchers and tech innovators), with some of the key takeaways set out below.

Patients

As summarised above, a central pillar of the draft strategy is about delivering care which is more patient-centred, to include giving patients better access to their own health and care data and building on the perceived success of the NHS and COVID-19 apps over the last 18 months. In parallel, the draft strategy envisages patients being confident that staff will always have correct, up-to-date information about them and their care, no matter what their care setting, so they do not have to keep repeating details unnecessarily. This links in with proposals for health and care information to be shared across the system, including between health and social care (detailed further below). 

Frontline staff

The focus for frontline staff is also very much on improving access to information, with the draft strategy aiming to unlock data sharing across the health and care system. This is reflected in the government’s commitment to delivering comprehensive shared records (with 2024 given as the timeframe for this).

The government also plans to address the need for more clarity on sharing of data for wider purposes by introducing new legislation (as part of the Health and Care Bill) which would place a duty on organisations within the health and social care system to share anonymous information - both data that is not identifiable such as bed capacity, and de-identified data - where this would benefit the health and social care system as a whole. 

Leaders/policy makers

Clearly, local leaders/decision-makers need data about service delivery and population health in order to plan and commission services to meet local needs and manage risks. This links in with plans for further integration of health and care services to be set out in the Health and Care Bill, with the draft strategy emphasising that each Integrated Care System (ICS) will be expected to use digital data to help drive systems working.

Social care

The Covid-19 pandemic has exposed large gaps in social care data and the draft strategy starkly highlights a need for better information about quality, costs and workforce requirements, including for the purposes of planning and commissioning services.  The draft strategy proposes to address this through a commitment to work with providers to accelerate the adoption of digital social care records through the NHSX Digitising Social Care Records Programme (timescale 2024). There is also a plan to introduce legislation (again via the Health and Care Bill) which will give the Secretary of State for Health and Social Care a power to require data from all registered adult social care providers about the services they provide, whether funded by local authorities or privately by individuals, in order to build a better picture of the delivery of adult social care services across England.

Researchers

One of the key impediments to research, according to the strategy, is that researchers are often seen as operating ‘outside’ the system, making it difficult for them to access the information they need. There are a number of plans afoot to reassure the public that data used for research purposes will be kept safe, including the development of technological advances such as ‘trusted research environments’, which are secure spaces where researchers can access data without compromising privacy. There is also an ongoing ‘rapid review’, commissioned by the government, into the efficient, safe use of health data for research (the Goldacre Review), which is expected to give its findings and recommendations by the end of this year.

Innovators

The government is keen to ‘safely grasp’ the opportunities for data-driven innovation and to support developers and innovators.  The government wants to make the UK a leader in ‘proportionate, innovation-friendly’ regulation of AI technologies, with the ‘NHS AI Lab’ working to create a regulatory framework designed to both support innovation and give patients/clinicians confidence that AI products are safe and effective. There are also commitments to develop unified standards for efficacy and safety testing of AI solutions (timeframe 2023) and to develop a multi-agency service for innovators seeking advice on their ‘regulatory journey’ (to be piloted this year and rolled out in 2023).

What next?

The government is inviting views on the draft data strategy before publishing a final version later in 2021, when more detailed plans for implementation are also expected.

To have your say on the draft strategy, you can access the online survey, which will remain open until 5pm on Friday 23 July 2021.