“Japanese people are very conservative with regard to sharing their health data”

Thinking preventively

Why Japan’s attitudes towards the sharing of health data should change


August 2020 Feature / Text by Justin McCurry

When public health is at stake, the sharing of information between medical institutions, tech companies, and government agencies can mean the difference between containing a pandemic and allowing it to spiral out of control.

The benefits of using technology to accumulate and disseminate health data — and consequently improve diagnostic and treatment capabilities — are clearer than ever. Yet Japan has resisted health-data sharing, even in the age of Covid-19.

As Nobumasa Akiyama, a professor of international politics at Hitotsubashi University, wrote recently for the Council on Foreign Relations: “Legally and politically, there is no appetite in Japan for any mandatory enforcement of government personal data policy.”

This reluctance stems from concerns over privacy, particularly now that big tech — including firms with mixed track records on data privacy — is increasing its role in the healthcare sector. As a result, Japan has been slower than its European counterparts in reconciling data sharing and the protection of individual privacy.

The European Business Council in Japan (EBC) is pushing for a more integrated system for sharing health data here while recognising the need to address privacy concerns. In its 2020 white paper, the EBC notes the perennial challenges facing Japan’s healthcare system, primarily the country’s ageing population and the attendant rise in serious, chronic conditions.

Labour shortages, combined with the under-provision of intensive care units (ICUs) and a growing number of hospitals and clinics struggling to survive financially mean Japan must “move from a focus on the treatment of disease to a more holistic approach”, the white paper states.

Medical costs, it adds, “should be reduced by a combination of detecting abnormalities at an early stage through health monitoring, delivering accurate and specific diagnoses, sharing diagnostic results among healthcare institutions, and realising timely and efficient medical services, as well as by deploying and disseminating these improvements throughout the healthcare system.”

Persuading hospitals to permit outside entities to establish and maintain systems that would enable them to achieve those goals is proving a challenge, according to several European firms.

Sadakatsu Maru, general manager of the Japan office of Radiometer, a Danish healthcare services firm, said that the Covid-19 pandemic could be a catalyst for lowering resistance towards the sharing of health data, but cautioned that many medical institutions remained wary.

He cited Japan’s Hospital Information System, which contains data on laboratory diagnostics.

“Radiometer can provide remote diagnosis services or an auto-software upgrade programme for this,” Maru says. “But hospitals hesitate to open their connection ports to outside vendors like us due to their data privacy policies.”

Evidence of Japan’s unease when it comes to data privacy can be seen in the low adoption — just 17% — of My Number cards, which authorities can use for social security, taxation, and disaster response.

Similarly, an online system was launched in May that allows the national government, local authorities, and medical institutions to share information about Covid-19 patients but, as of last month, it had only been taken up by about a quarter of local governments.

Shinichi Eda, head of medical, quality, and regulatory at Roche Diagnostics K.K., believes that individual users of healthcare services share institutional concerns over the potentially improper use of health data.

“Japanese people are very conservative with regard to sharing their health data with others, especially with private companies,” says Eda, adding that Roche Diagnostics, part of the Swiss multinational healthcare company, had sometimes struggled to convince those taking part in clinical trials to consent to their data being shared.

This is a critical part of the drug approval process, Eda notes, pointing out that gaining patient consent invariably involved “a certain degree” of time and energy on the part of physicians.

However, Japan’s demographic outlook arguably makes it better placed than most to benefit from the wider dissemination of health data. In this ageing society, it would provide health services with an additional tool in the battle against lifestyle diseases, such as obesity and high blood pressure, which can lead to more serious conditions later in life.

“Japan is one of the world’s fastest-ageing nations, so disease prevention and health maintenance are top priorities in the government’s strategy,” Eda says. “With more focus on prevention and health maintenance, we would expect to reduce total healthcare costs and make it possible for older people to remain in the workforce.”

He is cautiously optimistic that, in the coronavirus era, people in Japan will begin to recognise the vital role their consent can play in improving diagnostic and treatment capabilities.

“With Covid-19, people are better able to see the importance of diagnosis so I hope they are willing to share their health data and improve outcomes,” he said. “But only time will tell if that really happens.”

Technology that measures health levels, coupled with systems that quickly and accurately put data into the hands of health professionals, is transforming attitudes towards healthcare. Instead of prioritising treatment, a greater emphasis is being placed on prevention and health maintenance, with all of the obvious financial savings that entails.

Using data to anticipate health issues will result in a more efficient healthcare system in Japan, according to Jama Nateqi, chief executive officer of Symptoma, a digital health assistant.

“Five-dollar problems can be identified and treated before they become thousand-dollar problems. This approach is enabled by digital health,” he says. “The question is, how can sharing data be anonymous and valuable to Japan’s citizens?”

Maru agrees that freer access to data would result in more accurate diagnoses and, in turn, more effective treatments.

“Preventive care is going to be much more important for early diagnostics, along with faster and better treatment,” he states. “That means we can expect to reduce total medical costs. Preventive medicine — personalised or tailor-made programmes to maintain better health — could be one of the potential areas.

“I have not seen tangible changes in the situation for many years, but the ‘new normal’ with Covid-19 may quickly bring about a holistic change in the environment.” •

“With more focus on prevention and health maintenance, we would expect to reduce total healthcare costs”