Why we need to unlock health data to beat disease

The digital revolution in healthcare offers the promise of better health and longer lives for people around the world. New digital tools can help doctors and patients to predict, prevent and treat disease, opening the door to personalised medical care that is cost-efficient and highly effective.

Digitization across the entire healthcare sector — from hospital operations to the production of medical devices, vaccines and other pharmaceuticals — stands to benefit everyone, through improved efficiency at medical institutions, better care at home and stronger support for everyday health and wellbeing.

The essential ingredient in digital healthcare is data. Developers and service providers need health data to build and deploy effective solutions. So far, unfortunately, the potential benefits of digital healthcare have been under-realized, in large part because of data chokepoints.

Individuals and institutions are often reluctant to share information about health. Thi is understandable: health information is sensitive and personal. Freeing up healthcare data — making sure it’s accessible to well-qualified researchers and others who can use it for the good of society — requires demonstrating to all stakeholders that information sharing is in their interests and can be done in a safe and trustworthy way.

Let’s start with individuals, who are the ultimate providers of health data. Too often, people see no benefit in sharing their personal health information. That needs to change.

It’s become common in healthcare to talk about individual ownership of data — a dramatic shift from the past, when medical records and other information were mostly controlled by institutions, such as hospitals and health-insurance providers. But the shift to individual ownership has been executed poorly so far. Medicine and nursing care are specialised fields and information asymmetry means individual data owners rarely know how to put their information to use or what they stand to gain by doing so.

It should go without saying that the 'reward' for sharing data is better health. Lifestyle-related diseases, which are more prevalent in ageing populations, often do not become symptomatic until they have progressed to a dangerous level. That makes timely monitoring and assessment crucial. In a world where people are living longer and longer— '100-year societies,' as we say in Japan — data-enabled early detection is perhaps the best tool we have to stave off age-related health crises.

Abstract arguments, however, rarely convince people to consent to sharing personal data. Special efforts are needed to show specific, individual benefits and make people feel a tangible sense of control.

In Japan, the city of Arao is conducting an experiment to enable patients and their families to check information on electronic health records (EHRs) using their smartphones when they visit affiliated hospitals. Test results, prescribed medications and other information can be monitored. The system is expected to reduce costs for municipalities that are struggling to fund medical and nursing care for growing elderly populations. The money saved can be diverted to programs that help people live healthier lives, creating a virtuous cycle.

Digital healthcare isn’t just a matter for patients and medical professionals. Lifestyle data with implications for health is broadly distributed, so the non-medical field needs to be involved as well. Takamatsu, another Japanese city, is attempting to address this difficult issue by building a common data collaboration infrastructure for the public and private sectors.

SOMPO Light Vortex, a subsidiary of SOMPO Holdings, a Japanese insurance and nursing care company, has created an app for Covid-19 vaccination certification and personal health records (PHRs) that is connected to Takamatsu’s municipal data infrastructure. Combining a range of data on health and lifestyle patterns in a trusted platform overseen by local government is expected to offer benefits in areas ranging from disaster prevention to wellbeing.

Ensuring the interoperability of data held by governments and medical institutions is also essential to providing effective digital healthcare. In Japan, for example, there are more than 200 regional healthcare networks with their own EHR systems. Most of these government-subsidised systems do not provide information that is useful or treatment and few medical institutions or patients use them (some reports indicate that only 10 out of the 200 are economically self-sustaining). Globally, too, the spread of EHRs and PHRs has faced obstacles, as shown by the failure of PHR projects by a well-known technology giant.

Japan’s Nagasaki Prefecture has built one of the more successful regional health-information networks, Ajisai Net, through determined cooperation with a range of stakeholders. By involving medical associations proactively in the management of the system — which started with a single hospital — Nagasaki has increased the amount of information accessible through Ajisai Net to the point where it can now be referenced in daily medical care for things such as test results, image data, first-time hospital visits and prescription details. The number of registered patients and participating institutions continues to grow.

Interoperability, like other aspects of digital health, requires public-private cooperation. With more and more national governments, including Japan’s, providing citizens with digital access to information held in public health-insurance systems, health authorities and businesses need to work together to ensure that new digital platforms can incorporate information from a range of sources and are fairly operated and free of 'vendor lock-in' by any single, powerful technology provider. Longer-term, developers should keep interoperability across national borders in mind, too.

Sustainable business models are also important. These must be developed through broad collaboration with industry, governments and academia. Nagasaki’s Ajisai-net is a rare example of a digital health-information network that does not rely on public subsidies. Other community healthcare projects bringing together the public and private sectors in Japan include educational programmes developed by Takeda Pharmaceutical: one for the University of Tokyo to nurture future global healthcare leaders and another for Tokyo University of Pharmacy and Life Sciences to enhance the regional healthcare system. Takeda is also developing monitoring devices for patients with Parkinson’s Disease with the St. Marianna University School of Medicine and Kanagawa Prefecture.

At the World Economic Forum Centre for the Fourth Industrial Revolution Japan, we have compiled a toolkit to help stakeholders and other fields to promote and use digital personal health records more effectively. This is based on discussions between a wide range of governments and companies. Interested readers can read our recent report for more details. We hope the hints it provides can help free up invaluable information and contribute to global health.

Read the briefing paper: Key Agendas for Healthcare Data Use in 2040: The Future of Health Data in the Fourth Industrial Revolution