The inconsistent data infrastructure across ICSs in England risks quality of care and increasing inequalities, a report has found.
The research, called Joined up data, joined up care, by Understanding Patient Data, White Tail Consulting and NHS Confederation interviewed 44 senior leaders across 11 ICSs from each region in England.
It found that there was ‘considerable variation’ among ICSs, with some having large analytical datasets containing information from a number of sources, including primary, acute, community and mental health providers, as well as local authority social care. But others were ‘significantly less advanced’. One ICS had no flow of primary care data outside of shared care records.
The report suggested that there was a risk this would ‘exacerbate inequalities’ across the healthcare system.
It said: ‘ICSs with advanced technical infrastructure are already realising benefits from sharing data for individual care and analytical purposes. There is a risk that this variation increasingly impacts on the quality of care and public health services available to citizens in different parts of England – and sometimes within the same health and care systems where individual GP practices have not opted into system-level approaches.
‘This carries the risk of exacerbating existing inequalities in access, experience and outcomes, as well as it making it very challenging for individuals to understand how their data is being used in the health and care system.’
‘Lack of coherence’
ICSs also reported a lack of coherence in national policy on data use, as they have been encouraged to develop local population health capabilities at the same time as the federated data platform being developed.
Some ICSs had delayed building a local data platform because they viewed investment in this as a potential ‘duplication of effort’.
Others suggested that there was an additional administrative burden with multiple instances of patient data across systems such as electronic patient records, shared care records, local population health management platforms, the FDP and secure data environments.
The report said: ‘This perceived lack of clarity is causing stasis in some areas due to uncertainty about making investment decisions.
‘Participants argued that existing data legislation remains a significant challenge to the sharing and linking of data for analytical purposes, not least due to the fragmented nature of data controllership in England, with rich primary care data controlled by several thousand GP practices. Many ICSs described a lack of clarity of what is and is not lawful in this area, especially in the use of shared care records as the basis of creating an analytical dataset.’
The report’s authors had 17 recommendations for policymakers, including that they work with ICSs to develop a national plan for data improvement aimed at supporting those who are less developed, to reduce variation.
It also called on ICSs who are more mature in their data infrastructure to work with policymakers to develop good practice approaches and agree a common channel for sharing good practice with other systems.
Nicola Hamilton, head of Understanding Patient Data, said: ‘ICSs are important bodies with an under-recognised role when it comes to the use of health data. By drawing out the detail of what some of them are doing, their aspirations, and challenges, we hope to support them to work together to use health data in ways that enable them to fulfil their purposes as well as meet citizens’ expectations.’
Chris Branson, director at White Tail Consulting said: ‘It’s really important that ICSs are meaningfully incentivised and supported to continue to develop data and analytics capabilities and invest in the long-term benefits that data can enable. This is especially vital in those systems where data use is less well established, so that we avoid a postcode lottery of data-enabled care.
‘We also need to ensure we take the public with us on this journey, building their trust and support by ensuring their data is stored securely and shared responsibly and explaining how their data is being used to improve care.’
Report recommendations
- Support ICSs to engage with patients and members of the public on uses of data, including through increased collaboration, and ensure that local engagement is guided and informed by national and regional public engagement activities, such as the large-scale public deliberation and the forthcoming data pact.
- Promote a stronger dialogue and increased communication between national teams and local data leaders on how national and local organisations can work in a joined-up way to deliver on national data priorities and serve the needs of local organisations.
- Help ICSs gain greater clarity about FDP functionality, plans and longer-term timelines for system-based use cases, especially regarding population health management, incorporation of primary care data, and re-identification of data by clinicians.
- Work with ICSs to consider how technology budgets can be provided in ways that best reflect current and future digital and data costs and that support local decision making.
- Working with ICSs, develop a national plan for data improvement aimed at supporting less developed ICSs and reducing variation in data maturity.
- Working with ICSs that have established successful techniques and processes, develop a range of good practice approaches to data development and implementation and agree a common channel for sharing good practice.
- Support ICSs to consistently share code and accompanying technical documentation to minimise duplicative effort and promote collaborative approaches to technical development.
- Explore ways to simplify and clarify information governance requirements about data sharing between health and care organisations and within collaborative place-based partnerships for planning and population health purposes.
- Work with ICSs to develop and share a resource outlining viable IG approaches for secondary use data sharing, including common use cases and their legal bases.
- Where appropriate, work with ICSs to explore ways to streamline and reduce duplication in applications and approvals processes for secondary uses of data for planning and population health purposes.
- Work with ICS data users to review the current application of data standards in digital systems and tools and consider options for facilitating improvements in data quality, including by working with suppliers.
- Consider supporting ICSs to use levers and incentives around the recording of data by healthcare providers, especially where certain priority data categories are under-recorded.
- Provide support and guidance on the procurement of data systems and tools, such as through national guidance or frameworks.
- Following the Hewitt review recommendations, minimise central reporting requirements on ICSs and prioritise development of processes for automating data submission (including through the FDP).
- Informed by a national skills mapping exercise, develop and deliver a national training programme for analysts to serve future priority data requirements, as well as exploring ways to train early careers analysts in local and regional roles, for instance by expanding the current NHSE data analyst graduate trainee scheme to include placements in ICSs.
- Support the establishment of and recruitment to senior, non-managerial technical posts in highly specialised analytical areas.
- Develop change management and quality improvement initiatives to improve data literacy among leaders, managers and clinicians and promote the use of data-driven insights in decision-making.
