A professor speaks: why a bright future of digital healthcare is closer than you think

What horizon of digital healthcare have you been sold? Genetic profiling and an app for every ailment? If so, you’d be forgiven for thinking there’s a long way to go from the current experience of booking an appointment with your GP.

Here, from my vantage point as director of the Health e-Research Centre, I’ll explore how information technology could transform the way we interact with health services.

Before I look at what’s wrong, let’s not lose sight of what’s right: the NHS is the envy of policymakers the world over. Since the first NHS patient was registered in 1948, there’s been a commitment to universal healthcare free at the point of need.

Every day, 1.5 million patients are treated by a workforce of 1.7 million. The UK experiences better health, and spends less on healthcare, than nations of equivalent or greater wealth.

Yet the current route of entry to this wonderful ecosystem of services is a telephonic gauntlet, with busy receptionists acting as gatekeepers. Designed to triage GP access according to need, the system isn’t without fault: patients must endure long waits in electronic holding pens; key symptoms remain unrevealed despite probing questions; fantastic ailments are proffered in Oscar-worthy attempts to work the system; and – my late mum’s favourite backup plan – patients resort to sitting in the waiting room to door-step the doctor.

Herein lies the conundrum: on one hand, we have controlled access to the NHS, which delivers world-leading efficiency; on the other, the public have come to expect the online, on-demand services of a digital economy. But here also lies an opportunity to use digital resources to support self-care, freeing up the time of health professionals for those who most need their help.

Can self-care be underpinned with helplines, algorithms and a web of self-help recipes? Well, the NHS Direct experiment led to the 111 phone line and online symptom-checkers. These meet part of the need, but they don’t empower patients with personalised, persistent information about their health and care. What’s required is an easy-to-use combination of medical records and medical “textbooks”, open to both the patient and their care team at the same time.

Is the NHS ready for this culture shift? Allow me to share with you a story of how one GP surgery in Manchester created a sea change in opinion, gluing the digital tomorrow to the reality of today.

In 2000, a GP and colleague of mine, Dr Amir Hannan, had a special need to re-evaluate the way his practice interacted with its patients. Following the trial of infamous GP and serial killer Harold Shipman, Dr Hannan was appointed to help rebuild the practice’s patient-doctor relationships.

To do this, he and his colleagues set about creating a “partnership of trust”, involving transparency in the way they interacted with their patients. Central to this was patient access to records online – a controversial innovation at the time.

Explaining to his patients how and why they should use this facility, Dr Hannan gradually saw the project snowball: patients not only accepted the partnership, they loved it. From the ashes of a real-life horror story sprang a community of engaged evangelists taking ownership of their local healthcare services.

One of the most passionate advocates of patient access to records was Margaret Rickson. Sadly, Margaret passed away in 2015, but she wanted her story to be told. Since she suffered from a long-term lung complaint, Margaret struggled to pick up repeat prescriptions without getting out of breath. So, when she heard about Dr Hannan’s initiative, she took up IT lessons – at the age of 77 – acquired her first PC and became the first person in her community to order a repeat prescription online, making the most of the home-delivery service.

Barriers to change

The technologies used then, and now, to enable online access to NHS records were commonplace: web-based authentication (using credentials collected from the practice) and read- only rendering of records in a browser. Indeed, the innovation wasn’t technical but social, empowering patients to become more engaged in their healthcare and to influence the way local health services are delivered.

Today, there are technical barriers to further innovation in access to health information and care. First, in terms of systems’ requirements: to envision holistic digital healthcare, we must create a new understanding of what a patient is – less a passive recipient and more a coproducer of care.

Second, in terms of legacy systems: to plug the blind spot of what is happening to a patient’s health in between contacts with the NHS, we must join existing clinical information systems with the developing consumer health technologies that are centred on patients/citizens.

Although Google and Microsoft have tried to establish personal health record systems that interoperate with clinical information systems such as GP records, the results have been underwhelming. Google Health was canned, and Microsoft’s HealthVault is making slower progress than expected. This shouldn’t be surprising: a typical NHS hospital IT department can have tens or hundreds of databases from a variety of vendors, with only a handful of staff who know how to integrate them. Even the integrated offerings from large vendors are effectively delivered as a “kit car”.

Considering that the NHS is one of the world’s largest stores of computable clinical information, you might expect industry/NHS partnerships to be forming a crucible of personal health record innovation. However, this isn’t the case.

Sensitive systems

Why? Well, in addition to the blizzard of legacy systems, harnessing the raw data as actionable information isn’t as easy as it might seem.

Let’s take a look at a typical GP record system. There are two main databases: the “demographic file” record, containing facts about you such as your name, your address, your date of birth, your NHS number and the GP with whom you are registered; and a “journal file” of healthcare transactions, such as a diagnosis code with the date it was made, who made it, and a text-based “rubric” describing the code, which the GP can edit.

Diagnostic observations such as “COPD r/o” (shorthand for “chronic obstructive pulmonary disease has been ruled out”) can be found – so the information isn’t as computable as it first looks. Furthermore, the traditional record-keeping culture is one of “note to self about my patient, and messages to colleagues” rather than “information that my patient, I and other care-givers have recorded to support (self) care”, so you can understand why some doctors may not want to open up the record if they’ve been using shorthand that might misinform or offend. But things are already changing.

From April 2015, the UK mandated patient access online to GP records. This was a major step forward that is likely to engage a new generation of patients to take a more active interest in their health data. The notion of access for consuming information about oneself is then likely to give way to what health informaticians refer to as “coproduction”.

Patient power

Coproduction is the crossroads where actively engaged patients meet with technological advancement and capability. The result? An empowered community involved in the generation of its own health information – and the point where the dawn of personalised medicine breaks through.

Patient-driven notes could be used to assist conversations with health professionals, tapping into a new source of valuable information. No longer will the blunt instrument of “how did you get on with your tablets?” be necessary at a follow-up visit to a GP, who too late discovers the patient stopped their course of antibiotics early because they were feeling better.

Instead, an online story – via an NHS app or SMS loop – showing a drop-off in tablets being taken as quality-of- life scores pick up could prompt an alert to be sent to the primary care team, which could respond with supportive messages encouraging the patient to finish their course of tablets, thereby reducing the risk of breeding drug-resistant bacteria.

At the same time, new healthcare signals will emerge from the booming market in wearables. Most of the major consumer IT companies are introducing smartwatches that can record changes in heart rate, movement and skin temperature. Although not intended for clinical use, the data could help alert patients who seem to be running into problems.

For example, a patient with chronic lung disease who’s developing a serious chest infection might have an increase in temperature and heart rate that signal the need for treatment. Early treatment in the community can prevent deterioration and keep patients out of hospital – lowering their risk of premature death or catching other infections, alleviating suffering and saving money that can be used to help other patients.

There are regulatory obstacles to overcome, including the legal classification of clinical predictive algorithms as “medical devices”. As such, the health applications of smartwatch data may be restricted to the fitness market, which is less regulated than healthcare. This could deprive patients with long-term conditions of necessary innovation.

Let’s look further into the future and imagine the ideal GP record.

Simple: there isn’t one. Instead, personal health information is synthesised from multiple sources, ranging from wearables to multiple healthcare settings such as hospitals, general practices, community nurse visits, pharmacies and opticians.

Vision for the future

This information may start to look more like a digital avatar than a filing cabinet. Indeed, it needs to have different “personalities” to maximise the engagement of individuals in reporting changes in their symptoms and other personal health information that can guide care, while presenting the same information in different ways to health professionals.

Embryonic developments of this kind of interaction can be seen at clintouch.com, where apps empower people to monitor their own symptoms and medication. Critically, the personality of the app is co-designed by the main users – the patients.

There’s a long way to go from today’s apps to tomorrow’s health avatar, but substantial benefits can be realised incrementally. Crucially, the ideas and the will to utilise technology in this way are already in place.

Of course, demand alone may not provide the environment needed to incubate complex innovations such as the healthcare avatar. A social contract between public-sector service providers and the general public, similar to that underpinning the NHS, may be required to help protect and govern the advancement of holistic digital healthcare.

In addition, multiple nations and companies will need to work together if the algorithms supporting care are to learn in efficient and transparent ways. Yes, this is a big vision.