A digital health record for every citizen

A new report from the Tony Blair Institute for Global Change makes a clarion call for a digital health record (DHR) for every citizen to help drive improvements to health and care and ensure that the NHS is ready for the artificial-intelligence era. It says that the DHR would be the “single source of trust” for their health and care data – data that sits across hospitals, GP practices and pharmacies. It explains that it would help support patients to access the right care at the right time and facilitate preventative care. Preventative care being one of the ‘big shifts’ required to put the NHS back on track says Secretary of State for Health and Social Care Wes Streeting. 

Across the NHS and social care – and other care settings such as hospices, pharmacies, dentists and optometrists - health and care professionals are using Shared Care Records as a means of providing a holistic view of a person’s clinical and care history. This local digital platform facilitates inter-service collaboration but also saves time and enhances the quality and safety of care provided. Shared Care Records provide access to selected information within a local Integrated Care System – it is not an individual’s full health and care record and does not allow for data flows to other provider portals, patient portals or insurer portals, which the DHR proposes to do. Shared Care Records can only be accessed by health and care professionals. Patients do not have access to Shared Care Records.

Other types of integrated care records include the Summary Care Record which is an example of a narrow nationally integrated dataset that draws on GP records and is mostly commonly used in A&E, by pharmacies and by other authorised providers outside of general practice. Private providers are not able to access it and it does not have a direct link to the GP’s provider portal, nor into patient portals, such as the NHS App.

At a national scale, the NHS App continues to be developed with individuals encouraged to use it to access a range of NHS services on their smartphone or tablet. The report describes the NHS App as a ‘narrow but nationally available solution’ to integrated personal health data and highlights several limitations from only being able to display basic information from GP records and pathology results. However, it will soon be able to display information from secondary providers too. The other major problem that the NHS App has is that currently only about 80% of patients are able to view their GP record through it.

There are other references in the report to regional data sharing platforms, such as the Combined Intelligence in Population Health Action (CIPHA). Integrated Care Systems covering 17 million patients are using this platform, including Frimley ICS and Cheshire and Merseyside ICS. The report explains that CIPHA uses the data, analytics and associated tools to provide insights for service transformation in areas such as the management of patients with long-term conditions, support for patients in care homes, prevention programmes (covering the likes of strokes, fuel poverty and diabetes) and the management of waiting lists.

Also named in the report is the Patients Know Best platform for a more comprehensive and regional solution to data sharing. The system is designed to collate all data into a lifetime record that is owned by the individual. PKB has about 18 million patient records to date and currently supports 19 ICSs in collating, linking and processing primary and secondary care records of local residents.

The report says there is strong public support for a DHR, with 89% of patients in favour of having greater access to their medical records and 81% in favour of something like a DHR. The authors argue that NHS digital and data infrastructure should form part of Lord Darzi’s reform agenda which would help the NHS develop and adopt the spread of AI technologies in the NHS, supporting the drive to increase productivity. Lord Darzi’s report is expected in September.

If you would like to discuss any of the issues raised here or would like support with your NHS digital transformation strategy do contact us.

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