A response to the TBI recommendations for a Digital Health Record

https://institute.global/insights/public-services/preparing-the-nhs-for-the-ai-era-a-digital-health-record-for-every-citizen

By Dr Simon Eccles and Jane Tyacke. A personal view not company policy.

The Tony Blair Institute's recommendation for the NHS to adopt Digital Health Records (DHRs) promises to yield significant benefits for patients and their families, focusing on visibility of the patient pathway, routes to high quality healthcare information, and ease of access to support services.A DHR for every citizen could help transform healthcare delivery in England.

Such a record would need to be comprehensive to make it clinical safe; transparent to the citizen themselves for quality assurance; and centred on the individual for ease of use and for “customer satisfaction”. This is notably different from the existing portals providing access to individual electronic medical records based on organisation or local geography, e.g. my space for Epic.

There is a real challenge of how to make a record truly comprehensive while maintaining the consent of citizens who are frankly worried about passing all of their health data to the state, as opposed to just the clinicians treating them. Having been round this loop before, we can see two ways to make this better: allow citizens control of who sees their personally identifiable health data; and don’t just pool all the data but aggregate on demand.

If we give citizens complete control of their data and who sees it and how it is used, we change the paradigm from the state run NHS to one individual use of the health service. Trust is essential here. This trust needs to extend to allowing people to challenge their records, and to add information to their records, including for example symptoms and physiological measurements taken by citizen health devices. This would apply to NHS data, commercial data insurance data and data for wearable devices. Aggregated on demand means that our data should not be pulled into large data lakes, especially not those with a proprietary ontology, but rather aggregated on demand where that demand can be justified. This may be for the direct care of the individual, or in anonymised form, may be for quality assurance and monitoring of service delivery.

Providing clear visibility of the patient pathway is crucial to help patients own their own care. Digital Health Records could enable patients to understand each step of their healthcare journey, from diagnosis to treatment and follow-up. This transparency ensures that patients and their families are always informed about upcoming appointments, necessary tests, and expected treatments. It eliminates uncertainty, empowers patients to take a proactive role in their care, and ensures that families can provide informed support throughout the process.

This allows citizens to self-care and self manage for the majority of their time and with a tiered escalation model to their community support, including their GP, to specialist support including tertiary level care. This model is in evidence in London in renal care and in some centres for type one diabetes. It would be particularly helpful for people in receipt of specialist care for whom the majority of their activity takes place more locally. It hopefully ends a process of endless letters back-and-forth asking different doctors to change medications or do further diagnostic tests on specialist’s behalf.

A bigger challenge than the technology itself will be changing the way the system works to put the citizen at the heart of their own care. An example would be an individual’s medication list. At present our general practitioners have a medication list; the citizen may have a medication list and the hospital may have one. These can be different because no hospital can add a medication to the patient’s primary care medication list without their GP’s consent, understandably for reasons of payments and funding. For the same reason, data from a High Street pharmacy can only be added to a patient's GP record with a manual intervention step at the GPs. It means that an individual citizen does not have a single comprehensive shareable record of every one of their medications. This is especially true for those who receive complex medication on an episodic basis e.g. for mental health. The solution to this is a CRM, a customer relationship management platform, reworked to be the full coordination of all the data held about an individual citizen and therefore the ability to aggregate the medication (for example) or care plans, from all providers and pharmacies who have cared for them. This will also make it easy to see when there is conflicting information in different systems.

By leveraging CRM technology, Integrated Care Systems (ICS) can build on existing investments in Shared Care Records, ultimately providing a more cohesive and patient-centric healthcare experience. A key advantage of CRM systems is their ability to provide patients and their families with easily consumed, seamless access to health records. This can aggregate data, on demand, from individual systems of record; for example several hospital EPRs, the general practice record, community care EPR, mental health EPR and others. This transparency means that patients can easily review their medical history, track ongoing treatments, and receive timely updates about their health.

The DHR can be used to host functionality best reflected in that multidisciplinary, multi organisation space; for example cross-organisational care plans, escalation pathways and complex need pathways at the intersection of health and social care. For families supporting loved ones, especially those managing chronic conditions, this centralized access simplifies caregiving by keeping everyone informed and aligned, thereby reducing stress and enhancing the overall quality of life. In addition to the holistic view of the individual, and the transparency to that individual themselves, this allows staff to see how this record is being used, which care organisations are contributing and consequently allows the deduplication of care and an opportunity to fill in the gaps.

Key to involving the citizen in their care is excellent communication - and knowing whether it’s been received and understood. Salesforce also offers what other industries refer to as marketing tools, but in the healthcare context can be seen as improved communication. This may consist of making routine communication easier to use, understand and to record that understanding; for example care plans or consent for procedures. It can also be used to manage campaigns to drive people to greater uptake of preventative care. It offers the ability to see who has received, understood and responded to such communications. And allows clear next best actions to be taken for citizens who have not responded. This is in marked contrast to the current approach of screening invitations, for example, which are paper letters with no indication of whether or not the citizen will turn up to the appointment. A marketing platform also allows social marketing - for example a drive to increase exercise.

DHRs could also improve access to support services, which are essential for managing conditions effectively. Through a digital platform, patients and families can easily find and connect with support groups, counseling services, and other resources tailored to their specific needs. These services provide emotional, social, and practical support, creating a comprehensive care network. This holistic approach helps patients manage their conditions more effectively, reduces feelings of isolation, and enhances overall well-being.

Using DHRs could be a step towards helping citizens truly engage with their healthcare, enabling the NHS to pivot to prevention and wellness. We need to reinvigorate the social contract, underpinning the NHS, with all citizens. As well as giving people real clarity of their diagnoses, care plans and treatment when they’re ill - they can be encouraged to take part in the full range of preventative health. This includes immunisations, vaccinations, population level screening, cardiovascular disease health checks and mental health support. This can be expanded to include anti-natal care and more personalised screening eg Lung cancer screening. This level of personalised, meaningful engagement can lead on to greater engagement with research and quality improvement. This drive to prevention is frequently seen from health insurers as they can see the benefit in acute spending reduction; some even incentivise lower payments in return for higher preventative activity levels.

In conclusion, the adoption of digital health records as recommended by the Tony Blair Institute offers transformative benefits for patients and their families by providing clear visibility of the patient pathway, delivering high-quality information about health conditions, and facilitating access to crucial support services. But it needs the right technology platforms to support it.