Government should introduce a Digital Health Record for every citizen by 2029, says Tony Blair Institute

The Tony Blair Institute for Global Change (TBI) has called for every citizen in England to be given a Digital Health Record (DHR) by the end of this Parliament (2029).

In Preparing the NHS for the AI Era: A Digital Health Record for Every Citizen, lead author and former GP Dr Charlotte Refsum describes the DHR as a “single source of truth” for people's health and care data, bringing together records that currently sit separately in hospitals, care homes, GP practices and pharmacies. This would make care safer, more effective and more convenient for patients.

For patients, a DHR would allow them to take greater control of their own health. They could use the DHR to access personalised health advice through NHS certified apps or to navigate entirely new online digital services without necessarily having to see a GP first. It would also make it safer and more convenient to access urgent advice and treatment when they are unwell, and support the coordination of care for people with complex needs.

For the NHS, a DHR would help prepare it for the AI era, supporting the drive for greater productivity and financial sustainability. A DHR would enable the NHS to both develop and adopt AI technologies – freeing clinicians to spend more time with patients and speeding up back office processes like referrals. It would also enable GPs to provide more personalised advice and treatment. For instance, AI in conjunction with a DHR could identify people at increased risk of cancer and suggest earlier or more frequent screening programmes.

It could detect trends in blood tests that suggest control of their long-term condition is deteriorating and prompt a change in management and detect risk factors for frailty that prompt a review, avoiding a fall and subsequent hospital admission. It could also identify people who are eligible for new prevention drugs and prompt a consultation.

TBI Director of Health Policy and former GP Dr Charlotte Refsum said:

“Lord Darzi's audit of the NHS is expected to reveal an NHS in urgent need of reform: long waits and poor outcomes, crumbling infrastructure and outdated IT, burnt-out and striking staff, and record low rates of public satisfaction.

“Health Secretary Wes Streeting has listed his three priorities as a shift from treatment to prevention, a shift from hospitals to primary and community care and a shift from analogue to digital, with a focus on innovation. A DHR will be critical to delivering on all three of those fronts.

“Investment in the country's digital and data infrastructure may seem like a second-order consideration at a time when elective waiting lists stand at more than 7 million and there are an estimated 250 people dying prematurely in A&E every week – but without it, long waits and care failures will continue.”

Supporting people to live longer, healthier more productive working lives would benefit the economy. Recent macroeconomic analysis commissioned by TBI on the value of prevention described how a 20 per cent reduction in the incidence of six long-term conditions could provide a permanent uplift of 0.74 per cent to the UK's GDP within five years. A DHR could support the UK  to achieve that by enabling the roll-out of Protect Britain, TBI's proposed new prevention service, detailed in Moving From Cure to Prevention Could Save the NHS Billions: A Plan to Protect Britain.

One of the unique features of AI is its ability to help with the understanding of risk. Understanding risk means being able to predict events – and predicting events means being able to prevent them. When applied to the personal health information in a DHR, AI could generate a detailed and personal understanding of health risk for each citizen – and even help generate a mitigation plan.

The DHR will have most impact in primary care. Inpatient hospital visits are episodic, with clinical teams able to access relevant personal health data through the hospital record. It is out of hospital where an integrated, digital, longitudinal health record will have the most impact.

For patients with an acute care need (such as a fever, a cough or pain), access to a DHR would support services such as 111 to make sure they were seen by the right person, at the right time and in the right place – and that their complete medical record was on hand when they were seen.  But then for patients with a long-term condition, a DHR would empower them to take greater control of their health through apps and digital therapeutics. It would also facilitate care closer to home, with all members of a neighbourhood team able to work with up-to-date information so that care would be safer and more effective.  

A DHR would enable the NHS to develop its own AI tools to support clinical decision making by both clinicians and patients. With a DHR in place, the NHS should invest in the development of a national AI-powered health-analytics platform. It should be trained on the anonymised contents of the DHR, as well as peer-reviewed journals and clinical insight from practitioners. It should be a self-learning system that regularly updates its algorithms based on real-world evidence and should have strong governance with representation from government, academia, the health profession and citizens to protect against bias, hallucinations, privacy and cybersecurity issues.

Over time the platform would become a personal digital health assistant or “AI doctor”, interacting with citizens through a large language model. Citizens could then consult this AI doctor to help maintain their health (through personalised prevention plans and bespoke health coaching), for advice when they are unwell (through personalised symptom checks, self-care, triage and navigation advice) and to help them manage long-term conditions.

The TBI paper sets out a range of options:

1. Build from scratch.
2. Build out from existing secondary-care infrastructure.
3. Build out from existing primary-care infrastructure.
4. Scale an existing digital care record.

While the 2029 target for rollout of DHRs is ambitious, Dr Refsum's report sets out how it can be achieved with the requisite political will. The government should establish a dedicated unit within the Department for Health and Social Care, reporting to the Secretary of State. They should aim to have a working minimum viable product for the DHR within two years, and a comprehensive record within five years (one parliamentary term).

Supportive quotes

Mersey Care CEO, Professor Joe Rafferty said: “These records have been developed over many years at considerable effort and expense and it makes absolute sense to build on what we have. It also means that we can maintain the significant buy-in and momentum that we have achieved with patients, staff and provider organisations over our years of population health development. 

“In Cheshire and Merseyside, we are now benefiting from a wide range of applications including remote monitoring of heavy service users, waiting list management and fuel poverty. The enhanced case finding tool has become a key tool for identifying candidates for interventions (telehealth and integrated care teams for example) and diabetic and frailty use cases are becoming embedded.  

“The flow of data for analyst use is a key ingredient in providing analysts with a rich data set to create bespoke analysis and is at the heart of our Data into Action programme. If the TBI model is adopted, CIPHA will be a fast and efficient way for our member ICSs to achieve its goals.” 

Fiona Edwards, CEO of Frimley ICB and Chair of the Thames Valley and Surrey (TVS) Partnership Board which manages  the care record and population health system for over 4m citizens across NHS Frimley ICB, Buckinghamshire, Oxfordshire and Berkshire West ICS and Surrey Heartlands ICS said “We spent over five years building our data and population health platforms and they are fully embedded in many of our care pathways.  We are seeing substantial patient and organisational benefits from data driven initiatives and they are at the heart of our transformation programmes.  It is obvious we need to build from what we have rather than starting again with a new national scheme and the expanded uses detailed in the TBI report are natural and much needed extensions to the work we are doing.”  

Gordon Flack, CFO of Kent Community Health NHS Foundation Trust and SRO for the Kent CIPHA programme, The Kent and Medway Care Record said: “We have invested heavily over many years in building our data platform with extensive patient records for 2m Kent citizens and we now have over 10,000 clinicians using the record.  The system is used for a wide range of uses including improved management of waiting lists, shared record access and remote patient monitoring.  We have real momentum now and it is important that we continue building from what we have.”  

Further information

DHRs 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. Estonia, for example, earmarked 1 per cent of its GDP to fundamentally reform its health-data infrastructure; now 98 per cent of citizens have a digital ID and everyone has a DHR – and 20 per cent have had their genome mapped and linked to their DHR.

In South Korea Kakao Healthcare has partnered with Novo Nordisk to provide diabetes care using a digital diabetes-management service, and care pathways are continuously updated in line with best practice.

India's Apollo Hospitals group has created its own clinical intelligence engine (CIE): a clinical decision-support tool trained on personal health data from its millions of patients, the insights of its many clinicians and peer-reviewed journals. The CIE now has more than 1,300 conditions and 800 symptoms in its vocabulary, and it is available to all 4,000 Apollo doctors through a clinician portal and to all customers through a smartphone app.

Israel, HMO Clalit uses its Proactive-Preventive Interventions platform to analyse each patient's personal health data and rank their management against gold-standard guidelines – and their outcomes against typical benchmarks. It thereby delivers real-time updates on who is at risk and what to do about it, allowing for tailored advice and treatment options.

In the US the 21st Century Cures Act enables people to download their health records from any provider and add them to the Health Wallet app on their smartphones. From there they can download third-party apps, share their health data (with consent) and get access to personalised AI-powered insights.