Easing Relentless Demand by Empowering Patients With Their Data

Winter weather and increases in germs have once again exacerbated the relentless pressure on our health services, stretching the NHS in many places to breaking point.

Many NHS bosses and senior doctors have declared the crisis in 2017-8 the worst so far, with Dr Taj Hassan, the president of the Royal College of Emergency Medicine, telling the Guardian: “We are seeing conditions that people have not experienced in their working lives.”

While these seasonal pressures cannot be engineered away, the healthcare sector is ripe for digital transformation to ease the burden and empower patients at the same time.

The good news is that there is a step we can take today to help move towards greater uptake of digital health: patient centricity, putting patients in charge of their own health data.

Patients are already, by definition, at the centre of their own healthcare, with relationships with all their health and social care providers, so making them the central point at which all of their important medical data is collected and held is the next logical step.

Not only does this empower patients to take an active interest in their own health and self care, as the huge Open Notes study in the US found, but it also offers enormous savings potential on both time and costs, while increasing efficiency and improving outcomes.

With patient centricity, the entire eco system can work directly with patients offering new and novel approaches. A simple relatively quick win would be medical professionals at every appointment or interaction gaining greater access to information direct from the patient.

Another relatively simple example is health guidance and advice. Traditional health advice is impersonal and untargeted and it can be challenging to direct the user to the most appropriate service. Evidence has shown that targeted, bite-size advice is easier to comprehend and so more likely to be consumed. The ability to personalise relevant content is also important, and can be done across common interest groups, such as patients suffering from the same conditions.

Crucially, the technology exists for all of the above and a number of simple steps could be taken today to enhance how we engage patients.

Having empowered individuals with their data, there are a whole range of apps and services which can be layered on top to provide condition-specific care and advice. What’s more, with the individual owning and controlling their data, the requirements for local system and process changes are minimised as new services can be pushed directly to the patient.

With diabetic retinopathy, for example, an app has been developed in Iceland which is enabling patients to take charge of their own health using a combination of their own health records and self reported data to better inform when they need to engage with healthcare services.

This has huge potential to reduce the costs, and health service burden, of routine screening and diagnostics, as well as improving patient confidence that their condition is under control, an approach which could easily be applied to other areas of healthcare.

Moving beyond this, in healthcare, as in every other sector, artificial intelligence (AI) is already showing promise, although there are many legitimate privacy concerns when it comes to personal data. In response to this, AI vendors are working to miniaturise the technology so it can be closer to users on their own devices. Coupled with digi.me’s private sharing capability, which allows an algorithm to run over relevant data locally without sharing “off device” and only return the result, not share the actual data, there is huge promise here too for the individual to drive maximum value from their data with complete privacy.

As AI matures, we can expect it to have a great impact on public health and healthcare services. With a wealth of personal data at our fingertips, from health records to environmental data, as well as information from wearables and sensors, the question is not if digital health services will play an increasing role in prevention, early detection and diagnoses, but when.

While much of this can seem like a distant future, the reality is that significant progress in patient centricity is already being made around the world. In Iceland, for example, citizens are able to access a downloadable copy of their health data for the first time, in a whole-country project powered by digi.me. https://blog.digi.me/2017/05/31/digi-me-allowing-icelandic-citizens-to-download-their-own-health-data-in-world-first/

Similar work is also taking place in the US, with system suppliers publicly publishing citizen-facing APIs for data download. Digi.me is supporting both Cerner and Epic, for example, to enable individuals to get their data and share it.

Digi.me expects to bring the same capabilities to the UK in the first half of 2018, and there will be exciting opportunities to get involved with this pioneering technology.

The case for patient centricity is clear and compelling. The individual becomes the single source of accurate, up-to-date and comprehensive information about their health, while the healthcare industry benefits from enormous efficiency savings while delivering more personalised services.

With the impending GDPR legislation giving greater rights to the individual when it comes to electronic access and data portability of their personal data, there is a unique opportunity for the healthcare sector to seize. Routinely giving data back to individuals also helps build stronger relationships and trust as well enabling innovation.

By enabling routine access to data for individuals in an electronic format, using readily accessible technology such as APIs, we have the greatest chance of future-proofing health services for generations to come.

Fundamentally, the digital world we live in makes true patient centricity not just a possibility but a golden opportunity. We look forward to changing the paradigm – working directly with patients and using technology to put them at the heart of everything we do.

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