DHSC should have dedicated digital records unit, says Tony Blair Institute

The Tony Blair Institute (TBI) has called for the government to create a digital health record (DHR) for every citizen in the UK to be rolled out by the end of the government’s first term.

In a paper titled Preparing the NHS for the AI era: A digital health record for every citizen, the institute said that with the advent of artificial intelligence (AI) it isn’t enough to just collect AI technologies, and that the NHS needs to appreciate how different the AI era will be and what needs to change.

According to the institute, digital health records will be “key” to unlocking these technologies and establishing new models of care.

“They are fast becoming the foundational building blocks of modern health systems, with countries across the world investing in this critical piece of digital and data infrastructure,” the paper said.

The TBI set out the key elements needed in a DHR: a data core, applications layer, patient portals, provider portals and insurer portals.

“The data core is the heart of a DHR, essentially uniting information about the citizen, around the citizen,” the paper said.

“This will become increasingly important in the AI era. AI is already eroding the asymmetry of information that underpins the clinician-patient relationship. In future, AI will make medical advice more widely, cheaply and quickly available, making it far less likely that any one provider (even the NHS) will be able to hold all relevant data about one patient.”

The institute said all DHRs must have open application programming interfaces (APIs) with internationally recognised standards for interoperability, and although patient portals are not necessarily a part of the DHR, they are also important due to their potential for use in self-care.

“In the age of AI, this autonomy becomes even more powerful. Citizens are about to be confronted with a range of industry-grade, consumer-facing apps that could help them manage their own heath,” the paper said.

“Patient portals can act like a digital marketplace for those apps, with the option for citizens to share their DHR to improve the accuracy and personalisation of the advice.”

The TBI suggested that the NHS App could potentially do this. Provider portals are also seen as an important element, as they can enable personalised treatment and collaboration between multidisciplinary teams.

The paper also touched on insurer portals, which allow insurers to understand the risk of their customers.

“The NHS often isn’t thought of as an insurer, but it should be; it’s the NHS’s insurer function that allows UK citizens to pay according to their means, take according to their need and receive their services free at the point of use,” it said.

“At present, however, the NHS is unable to perform its insurer function effectively. It lacks the data to understand the risk profile of its population and it lacks the mechanism to ensure that risk profiles guide decisions about entitlements and allocation of spending – namely, the services that all UK citizens are entitled to and therefore can expect the NHS to deliver.”

According to the Tony Blair Institute, the lack of this leads to increased waiting times and disappointment as the NHS isn’t meeting people’s expectations.

It added that with the advent of AI, it would be possible to fairly accurately determine what people are going to die from and when.

“Only government, with its unique capacity to pool risk across the whole population, can provide the level of protection required, protecting its citizens from catastrophic healthcare costs,” it said.

The investment in DHRs should “not preclude IT budgets elsewhere, which should be ringfenced and protected”, it added.

The government has long attempted to ensure each patient has a comprehensive electronic health record, however the content of and access to health records vary from region to region. While national databases such as the Summary Care Record is in use across the country, it contains very basic information, and the NHS App can only display GP record information and pathology results.

“One major problem that the NHS App has is that only about 80% of patients are able to view their GP record through it,” said the TBI.

A complete DHR would replace the GP record as the integrator of health information, it added.

The Tony Blair Institute wants not only for the government to create a dedicated unit within the Department for Health and Social Care (DHSC) to deliver the DHR, but also called on it to legislate to make the health secretary a joint data controller together with GPs.

The government should also mandate suppliers to comply with interoperability standards and open APIs, according to the paper.

The Tony Blair Institute envisions this being delivered before the end of the government’s first term, and called on DHSC to begin a rapid design and build phase, and called on the NHS to invest in the development of a national AI-powered health analytics platform that will drive clinical decision-making, trained on anonymised content from the DHR.

“The DHSC should have access to anonymised insights from the DHR through an insurer portal to understand the risk profile of the population. This will help it to inform the allocation of spending across demographic groups and time horizons,” it said.

It also called on NHS England to ringfence and increase spending on further development of the NHS App.