Event Report: Healthcare in a Digital Society: Prospects and Challenges – Symposium "Redefining Healthcare in the Age of Digital Platforms" (Held on March 14, 2022)

September 8, 2022

On March 14, 2022, the symposium "Redefining Healthcare in the Age of Digital Platforms" was held as a joint initiative of two projects that form part of the KGRI "2040 Independence and Self-Respect Project": the "Platforms and the '2040 Problem'" project and the "Healthy Life Expectancy Extension Project."

The use of ICT medicine with wearable devices and health apps, as well as healthcare systems that monitor an individual's health status in real time, are seen as promising ways to extend healthy life expectancy. By having AI analyze biometric data, it becomes possible to provide individually optimized treatments and enable patients to take action based on their own judgment, such as encouraging behavioral changes toward healthy lifestyles. However, the intervention of digital platforms in medical care and individual decision-making is also an issue directly linked to legal and ethical debates.

This symposium brought together researchers from a wide range of fields, including platform business, system design, medical ethics, medical jurisprudence, and constitutional law. They discussed, from multiple perspectives, the prospects for health and medicine brought about by new healthcare systems, as well as the required legal order and challenges in social systems. This report covers the event with videos and summary text.

<Opening Remarks> Masato Yasui

Professor, School of Medicine; Director, KGRI

<Explanation of Aims> Masako Toriya

Project Professor, KGRI

Haruna Kawashima

Project Associate Professor, KGRI

<Keynote Speeches> Kazuhiro Obara

Futurist (remote participant)

Taketoshi Okita

Associate Professor, Tohoku University Graduate School of Medicine

<Panel Discussion> Comments: Toshiharu Furukawa

Physician; Professor, Keio University Law School

Tetsu Isobe

Professor, Keio University Law School; senior researcher, KGRI

Tatsuhiko Yamamoto

Professor, Keio University Law School; Deputy Director, KGRI

Masako Toriya

Project Professor, KGRI

Moderator: Haruna Kawashima

Project Associate Professor, KGRI

<Closing Remarks> Tatsuhiko Yamamoto

Professor, Keio University Law School; Deputy Director, KGRI

(Photo: Kota Sugawara)

Masato Yasui: Japan is at the forefront of the world's super-aging society with a declining birthrate, and the world is watching to see how we will overcome this situation. An effective approach is to extend the healthy life expectancy of each individual, and pursuing this ultimately leads to the issue of life and death—that is, the dignity of the individual. Based on the principle of "independence and self-respect" advocated by Yukichi Fukuzawa, the founder of Keio University, we are committed to addressing this issue head-on.

Video 1: Opening remarks by Masato Yasui, Director of KGRI (approx. 5 min.)

Masako Toriya: This event is a joint project between the "Platforms and the '2040 Problem' Project," which aims to form a new social order in the network space, and the "Healthy Life Expectancy Extension Project," which considers the digital healthcare mechanisms needed for future society. We will focus on the digital platforms that will shape future healthcare and consider their legal and ethical challenges.

Haruna Kawashima: The conventional healthcare system was built on a concept with physicians at the apex. How will this change with the intervention of digital platforms? While the decision to receive medical care has been positioned as a matter of individual self-determination, there is a concern that digital healthcare systems may guide individuals toward healthy lifestyles, potentially imposing a "duty of health." We would like to discuss a wide range of topics, from business models to ethical issues.

Video 2: Explanation of aims by Masako Toriya and Haruna Kawashima of KGRI (approx. 8 min.)

Kazuhiro Obara: I have always believed that the essence of the internet is to expand humanity and freedom. First, I would like to consider how the rules and strategies of society as a whole are changing due to DX (Digital Transformation).

The definition of DX is to change people's lives for the better through the penetration of IT, and digitalization is merely a means to that end.

A prominent example is the mobility service where you enter your current location and destination into an app and ride in a car driven by someone else. A key feature is that the driver's credit score is visualized, ensuring the user's peace of mind. For the driver, recommendations are made to protect their health while considering their work-life balance. In addition to the credit score from users, driving safety is measured by the smartphone's accelerometer, and based on performance, interest rates for new car purchases and insurance premiums change, which also helps reduce future economic anxiety.

Furthermore, the shift from owning to using cars contributes to reducing the environmental burden. China's largest mobility platform, DiDi Chuxing, has about 500 million users and 15 million drivers. Not only does AI match users wanting a ride with drivers, but it also reduces stops at red lights based on vast amounts of data, decreasing traffic congestion by about 10-20% and carbon dioxide emissions by about 5%. From a physical standpoint, it suggests breaks to drivers based on their driving tendencies and passenger behavior, and even recommends the best places to rest.

By utilizing data broadly, we are seeing preventive measures that make society as a whole healthier.

Similar technology is also being applied to shorten the experiment and simulation cycles in drug discovery and to predict diseases in advance by utilizing medical data.

In addition, Ping An Life Insurance of China, which boasts about 600 million users, distributes a pedometer app and issues points based on the number of steps taken. The healthier the policyholders become, the higher the profit margin for the insurance company, enabling it to offer more affordable insurance plans. It also provides online health consultations with doctors, allowing users to book appointments depending on their symptoms, with prescriptions also being digitized and medication delivery available, linking various services. It has also established a joint venture with Japan's Shionogi & Co., Ltd., a move toward integrating medical information into a healthcare system that includes everything from pre-disease care to treatment, medication, and therapy.

How do we think about the appropriate relationship with individuals without stopping the acceleration of such innovation? I would very much like to discuss this point.

Taketoshi Okita: Today, from the perspective of medical ethics with a background in ethics and philosophy, I would like to consider the care of oneself in self-care.

First, regarding the use of data, I would like to base my thoughts on Professor Tatsuhiko Yamamoto's description that by extracting patterns and correlations from comprehensively collected big data and applying them to an individual's dataset, we can predict characteristics and other factors, which can be useful in business and medicine.

Video 3: Keynote speech by Taketoshi Okita, Tohoku University Graduate School of Medicine (approx. 31 min.)

Regarding the collection of personal data using wearable devices, I myself, right after buying an Apple Watch, was exercising to prevent illness and reduce stress, but after a while, I fell into "self-care fatigue." Why do I have to burn 600 kilocalories every day? It's a matter of comparison with a group, but is it really "my problem"?

Project Itoh's science fiction novel "Harmony" depicts a future where the population has drastically decreased, and to ensure the survival of humanity, individual lives are highly valued, with health monitoring devices embedded in the body as part of a comprehensive medical management system. This situation is described as "humans outsourcing the management of their bodies," a phrase I find very suggestive.

Cultural anthropologist Maho Isono points out that to understand oneself, knowledge beyond oneself is necessary, but a characteristic of modern society is that this knowledge comes frequently. One example is the statistical view of human beings, a way of thinking that manages and controls health risks based on evidence.

Another person who has thought about caring for oneself is the philosopher Michel Foucault. He states that the positioning of self-care has changed over time, noting that "care of the self," which in ancient Greek and Roman times included political practice, was later condemned as a form of self-love or egoism.

Furthermore, the German-based philosopher Byung-Chul Han states in his book "The Burnout Society" that modern society has shifted from a disciplinary society, where one must adopt disciplines imposed by others, to an achievement society, where individuals enhance their own abilities to increase production efficiency and exploit themselves.

While it is useful to care for oneself by referring to probabilistic and statistical figures, as philosopher Tatsuya Higaki says, one's body cannot be completely controlled. Therefore, what is being questioned is "governance by wager" in light of future disease risks. If that is the case, is it not necessary to take responsibility for actions based on figures like "you have this probability of getting sick" or "if you do this, you can stay healthy"?

Under this line of thought, perhaps it is important to redefine self-care as a process that includes not only one's own body but also relationships with others, to constantly think reflectively, and to maintain a critical perspective.

Kawashima: We will now move on to the panel discussion. First, I would like to ask for comments from the four panelists who will be joining our two keynote speakers.

Video 4: Panel Discussion Part 1 (approx. 39 min.)

Toshiharu Furukawa: I will comment from the perspective of a physician and medical jurisprudence. The use of ICT in medicine can be divided into primary use, where individual medical data is used for that person's prevention, screening, treatment, and community healthcare; secondary use, where accumulated data is analyzed as a group; and tertiary use, where the results of secondary use are collected for meta-analysis.

As a real-world example of secondary use related to the COVID-19 pandemic, some countries have been conducting research to build AI models that predict disease progression based on data from their entire populations. At Keio University Hospital, research was conducted on the pathogenicity of variant strains based on genomic analysis of samples. However, in most international research, individual consent is deemed unnecessary for the retrospective secondary use of medical data.

The Act on the Protection of Personal Information was amended and came into effect this April, but there are still unresolved issues in the medical field.

Under the current Act on the Protection of Personal Information, a patient's medical history is considered special care-required personal information, and opt-in consent is required for its acquisition and provision to third parties. In this regard, under the current law's handling of genomic analysis information, a certain range of genomic data (base sequences) is classified as a personally identifiable code, but it does not fall under special care-required personal information. On the other hand, genomic information (information obtained by interpreting genomic data) becomes special care-required personal information if it is related to pathological conditions such as gene defects. However, the status of data with minor analysis added to genomic data, such as proteins and metabolites, as personal information remains unclarified. Furthermore, for anonymously processed medical information, which aims for utilization with opt-out consent for special care-required personal information, the limitations of its use can be pointed out due to data inaccuracies and the fact that it is a concept unique to Japan, which raises issues of international consistency.

Regarding the use of personal information for purposes other than the original intent and its provision to third parties in drug development research, an interpretation by the Personal Information Protection Commission has made separate consent unnecessary for public health purposes. It is necessary to discuss whether the spirit of this interpretation will extend to the commercial development of pharmaceuticals in the future. Also, while it is natural that the consent of the subjects themselves is necessary for clinical research and trials targeting them, it is also necessary to discuss whether data from past clinical research and trials can be used in future clinical research and trials.

Toriya: I would like to organize my thoughts on digital healthcare from a system design perspective.

The healthcare cycle involves moving from a healthy state to the onset of a disease, diagnosis, treatment, and then returning to a healthy state through cure or remission, or managing the disease without it worsening. With digitalization, as we begin to use patients' biometric information and life logs, patients can participate in treatments that were previously left to doctors, potentially transforming the doctor-patient relationship. Regarding monitoring with wearable devices, questions will arise about where the responsibility lies—with the doctor, the pharmaceutical company, or the device provider—and about the reliability of AI-based diagnoses.

Also, digital healthcare platforms can be broadly classified into three patterns from the perspectives of data accumulation and service provision.

The first is where multiple organizations jointly operate and provide services using data obtained from users. The second is where a single organization does this. The third is a method where users entrust the management of their data, and the entrusted organization passes the data to the service provider. It is necessary to organize and consider the ethical and legal issues for each of these patterns.

For example, when multiple hospitals share data, legal issues arise regarding the use of data outside the hospital and for research purposes. If the benefits for the service provider are not clear, the provision of services will not progress. Users may also be resistant, and even if hospitals or the government manage it, the inequality of opportunity becomes an issue. It is important to organize these complex issues and to have a stance of discussing them in a way that is easy for non-experts to understand.

Tetsu Isobe: From the perspective of medical and administrative law, the main parties in medicine are the doctor and the patient, and in Japan, the position of the family has also been a characteristic feature. And while the right to self-determination of the patient, whose body is affected by medical treatment, has traditionally been emphasized, there has recently been a growing trend to demand rational and appropriate behavior for purposes such as disease prevention.

In this context, what kind of impact will digital healthcare have? The protection of the patient's medical interests remains an important element, but regarding self-determination, it is necessary that the patient and the family supporting the patient are guaranteed the necessary information and are provided with an appropriate environment and support. In that respect, how can ICT be applied? Also, I am closely watching how the basic structure of medicine, where a trusted professional fulfills a duty of loyalty to the patient, should be transformed (or not transformed).

In any case, there are many promising aspects to promoting the use of healthcare systems, such as resolving the maldistribution of medical care and extending healthy life expectancy by intervening in the pre-disease state. Regarding personal information, an interpretative theory will be needed to make full use of it while providing a sense of security. There was also a point about a "duty to be healthy," but before that, efforts are needed to ensure that individuals can make rational decisions toward maintaining their health, to guarantee the necessary information, and to resolve the various obstacles that may arise in achieving this. There are many things to discuss, such as improving diet, creating exercise menus, and collaborating with registered dietitians. From a medical law perspective, I strongly feel that there are many issues right in front of us that should be addressed through interpretation.

Tatsuhiko Yamamoto: From the perspective of constitutional and information law, I would like to make two main comments.

First, regarding the definition of healthcare, shouldn't we distinguish between "public health" and "healthcare" for individuals? Public health, including medical research, is fundamentally targeted at the "public as a group," and the necessary data would be collective data such as anonymous or pseudonymous information. On the other hand, cases like the Ping An Insurance mentioned by Mr. Obara are directly targeted at "individuals," not the "public." I felt that individual self-determination becomes extremely important here.

The second point relates to the problem in Project Itoh's science fiction work "Harmony," which Professor Okita mentioned, where people who deviate from the guidelines are treated as "noise" against "harmony." Constitutional law holds that an individual's "good life" should be decided by the individual themselves. When digital platforms become involved, there is a possibility that they will impose a specific good life that the organization believes in. A case often cited in constitutional law related to individual autonomy is the "Jehovah's Witness blood transfusion refusal case," but in an optimized world, wouldn't religious minorities who refuse blood transfusions also be treated as "noise"?

How individuals can govern their own good life, and how that can be designed as a system. I believe this connects to the problem of how to link individual-level self-governance with community-level self-governance in a democracy.

Obara: I agree with the need for a common language between the collective sphere of public health and the individual sphere where individuals entrust their data under their autonomous will.

Also, Ping An Insurance's health consultations are currently conducted analogously by doctors, not AI, so it can be called a personalized service. However, the British startup Babylon Health is deploying an AI-based chat system for developing countries, connecting users to online consultations with doctors when necessary. In addition to a method that bridges the gap between the two by having the AI learn from the results of analog diagnoses by doctors, its success in Africa has made it applicable in the United States, leading it to become a unicorn. And regarding Professor Okita's fatigue from the nudges of the Apple Watch, Japan is actually ahead in research on such algorithms in the gaming field, so I believe that knowledge will be incorporated into the healthcare field.

Okita: I think the very nature of the self is being questioned, as in whether one can protect oneself through self-determination. The more society confronts individuals with numbers, the more they will interpret themselves through "something that is not themselves."

Yamamoto: When pursuing an algorithm that doesn't tire the user while utilizing AI, the less tired they are, the higher the engagement for the platform, leading to profit. For the user, this is a state of dependence, and from the perspective of self-governance, I think we need to consider a mechanism that moderately tires them and encourages breaks.

Video 5: Panel Discussion Part 2 (approx. 28 min.)

Furukawa: Since public health is built on individual data, the scope of data use should first be placed under the individual's control as much as possible. For secondary and tertiary use, the data will likely be separated from the individual and utilized on a platform, with the results returned to the individual. In addition, we must also consider the risks of system errors on the platform and the costs of construction and maintenance.

The reason remote surgery has not become widespread is largely due to cost issues, not problems with information utilization. There are high expectations for AI-based image diagnosis, but as it learns the characteristics of specific cancers, rare but significant oversights can occur, so universal practical application seems to be still in the future. On the other hand, the Apple Watch has been found to be very useful for detecting atrial fibrillation, so it seems necessary to consider the areas where AI excels and where it does not, on a disease-by-disease basis.

Isobe: From a medical law perspective, a doctor's judgment in clinical practice is recognized as having professional discretion. On the other hand, in the context of medical research aimed at improving public health, various mechanisms have been devised to avoid the risk of exploitation of the body, specimens, and personal data. However, the extent to which the issues of the individual and the public can be distinguished is a difficult question.

For example, in the United States, the Genetic Information Nondiscrimination Act was enacted to advance genomic research. This was because it was considered essential to build trust by creating an environment that prevents discrimination and ensures that individuals involved can feel secure, in order to promote the use of data and the advancement of science, technology, and research. I believe the way we structure mechanisms to gain societal trust is being questioned.

Kawashima: On the other hand, as the providers of healthcare expand beyond doctors, it seems that the formation of ethics, which has been a premise in medical law and policy, will become more difficult. Professor Toriya, from a system design perspective, how can this problem be solved?

Toriya: Regarding digital healthcare services, pharmaceutical companies, insurance companies, and medical device manufacturers are also showing an interest in entering the market. The challenges will change depending on which players take the lead and how they collaborate with medical institutions, so I believe it is necessary to first organize and discuss these issues.

Obara: Professor Toriya's model of the healthcare cycle was very easy to understand. On that basis, if there are business incentives, companies from the insurance and fintech sectors will enter the medical world. This is where problems arise in terms of individual freedom, when business entry occurs in areas beyond the reach of doctors' involvement, and when incentives are prioritized based on corporate interests rather than the patient's.

Okita: As one of the points being discussed in terms of responsibility, when individual activities are compared and driven based on specific epidemiological data for diseases like diabetes and heart failure, I feel that the reference points for management and governance, and the goals being aimed for, are set within a very limited scope.

Obara: I think there are three levels to self-governance. First, even a person who does not engage in healthy behavior should not be socially excluded. How much right is recognized to enjoy unhappiness or unhealthiness as a matter of personal choice? And how will the public side and the platform side cultivate responsibility, that is, the "ability to explain and respond"? I think this is what's important.

Yamamoto: Regarding the nature of the system, if health and credit scores are linked, it could lead to a "health fascism" where public services become unavailable based on scores or points. Fundamentally, we should think that even if one does not lead a "healthy" life as defined by the system, they should be able to maintain a minimum standard of living. I also think it's important that the plurality of values is maintained through competition among multiple services.

The individual's right to folly is also a difficult issue in constitutional law. Proactive information provision, like the warning labels on cigarettes, which leaves the final decision to the individual, could be a possibility. Responsibility is also important regarding the division of roles between doctors and AI. The EU's "General Data Protection Regulation (GDPR)," which stipulates the institutionalization of responsibility where important decisions are made by humans, seems to be a useful reference.

Kawashima: At this point, I would like to introduce a question from Hiroyuki Yamamoto, a professor at the Faculty of Law at Daito Bunka University, who is listening online. Regarding the future where various information will be accumulated, I felt that consent for the accumulation itself will become necessary, rather than for individual pieces of information provided. Professor Obara, what are your thoughts on the qualitative difference between the two?

Obara: AI is fundamentally capable of personalization beyond human judgment, so the premise is a situation that exceeds the scope of what an individual can decide on a case-by-case basis. On that basis, regarding the mechanism of entrusting privacy data through the accumulation of individual judgments, as Professor Yamamoto indicated, it is probably difficult to achieve without building competitive pressure where multiple companies strive to be close to the user and win their trust.

Kawashima: Finally, I would like to ask each of you for your thoughts on today's session.

Okita: Legal discussions are basically based on rights, but today I thought from the standpoint of duty, of how one should care for oneself. If it becomes inevitable to think about one's own behavior in line with accumulated data, it becomes important where to place one's axis of thought. I believe it is important to think about individual duties in parallel with rights and the social system.

Obara: Independence and self-respect can only arise within relationships. How do we guide the pressure toward soundness in the relationships between government, administration, companies, and individuals, and in market competition? There are many points that we must continue to question, such as the nature of healthcare systems that do not involve doctors and the duties of individuals.

Furukawa: I feel that what will be questioned from now on is the "quality of data." In the United States, humans check and standardize the quality variations between clinics and hospitals. And regarding the cost issue, there is still no evidence that preventive medicine has reduced overall medical costs in society. We must also deepen the discussion on the division of roles between AI and humans, and the extent to which platforms can intervene in individual freedom.

Toriya: The issue of self-governance and self-responsibility is very difficult to implement into a social system. An individual's self-determination cannot be separated from how the system is shaped. I would like to continue to deepen the discussion on a mechanism that can achieve a good balance and translate it into a concrete system design.

Isobe: It was a discussion that was both chilling and very exciting to see how the foundation of the doctor-patient relationship, which has been considered a natural premise in medical law, could change significantly, and how various transformations are pressing upon the nature of individual freedom and health.

Yamamoto: In addition to delineating the competitive and cooperative domains, I believe that the standardization of interoperability, as pointed out by Professor Furukawa, is also important for migrating data from the individual sphere to the collective sphere. How to separate the standardization of such data from the diversity of algorithms will be critically important.

As the super-aging society progresses toward 2040, how will we utilize data while protecting the "dignity of self and others," a phrase from Yukichi Fukuzawa? This symposium is not the end, and we would like to continue interdisciplinary and industry-academia collaborative discussions in the future. Thank you very much.

Held on March 14, 2022, at Mita Campus South Building, B4F, Room 2B42 (in-person + online format)

*Affiliations and titles are as of the time of the event.