Although Japanese patients have suffered various hardships and miseries, they have fought to improve their conditions and won the rights that they rightfully deserve. This paper aims to provide an overview of the history of what has been done for and by patients in Japan.

During a cholera pandemic in the latter half of the 19th century, patients with cholera were quarantined in facilities for evacuating people from disease (“Hibyoin”) and left untreated. With industrialization, tuberculosis became prevalent among the poor, especially among female factory workers around the 1900s; however, adequate treatment was lacking due to a shortage of sanatoria. Sexually transmitted diseases (STDs) were defined as “Karyu-byo,” which are diseases transmitted by geishas and prostitutes. Women have endured two tragedies: one as prostitutes and the other as wives, as a result of Karyu-byo spreading across society through prostitutes to men, and from those men to their wives. From the beginning of the 20th century, patients with leprosy wandering around towns and rural villages were admitted to leprosaria. This treatment was later extended to include all patients, and subsequently, a national policy was enacted to admit all patients with leprosy to leprosaria and to completely isolate them for life. Patients in leprosaria were subjected to imprisonment, reduced diet, confinement, reprimands, and other punishments, were forced to perform “work by the patient,” such as cleaning, laundry, and nursing care for patients with severe conditions, and were occasionally subjected to vasectomy. The early 1900s saw many patients with mental disorders being detained in private homes, which encouraged the establishment of psychiatric hospitals. In psychiatric hospitals, many instruments (handcuffs, shackles, chains, etc.) were used for patients who were out of control. Subsequently, custody in private homes was prohibited, and a system of involuntary hospitalization was established, whereby an individual with mental disorders who presents a risk of harming him/herself or others may be hospitalized in a psychiatric hospital.

In addition to patients with the diseases described above, those with pollution-related diseases, occupational diseases, iatrogenic diseases, rare and intractable diseases, acquired immunodeficiency syndrome (AIDS), and COVID-19 were also subjected to discrimination. In addition, there was a system called “patients for medical use,” in which poor patients were utilized for research and education.

After World War II, patients began to actively appeal to society to address their demands and issues, and this trend developed into the patients’ advocacy movement, which is said to be unique in the world. Patient associations were initially organized by patients in sanatoria and leprosaria. Since the 1950s, patient associations have been established for various diseases, including rare and intractable diseases, pollution-related diseases, etc. In the 1970s, various patient associations that had been established for each disease began to align with one another, and finally, the Japan Patients Association (JPA) was established in May 2005, as a unified body of patient associations.

The protection of the human rights of patients and the assurance of their livelihood and medical care are now explicitly stated in legislation. However, it has not yet been possible to elucidate the causes of the disease and to establish treatment methods that are specifically required by patients with rare and intractable diseases. To promote research and development, patients should be aggressively involved from the perspective of patient and public involvement (PPI).

Since death from overwork became a social problem, the enactment of laws and the establishment of standards for certification, as well as improved actions on both the company and worker sides have been made. However, there is rarely a day in which news reports on death from overwork, suicide by overwork, power harassment (bullying in the workplace, which is so-called power harassment in Japanese), etc. are not heard. This paper discusses “death from overwork/karoshi,” a common social problem worldwide, covering the evolution of “measures against death from overwork in Japan” and major cases, and describes the latest trends regarding current measures against death from overwork and cooperation, mainly between healthcare professionals and the legal process.

After summarizing how death from overwork and suicide by overwork became established as a social problem, as well as preventive policies, the Act on the Prevention of Death from Overwork, a review of the criteria for certification, activities by workers and their families who are suffering from overwork and stress in the workplace, and the activities of lawyers who have developed nationwide consultation services such as “Death from Overwork 110,” this paper provides a detailed explanation of the legal. In addition, we explain in detail the legal procedures to be taken when death by overwork or suicide by overwork occurs.

Medical professionals in the field of occupational health and judiciary professionals who work on the legal aspects of labor issues need to work together to combat and provide support regarding death from overwork. Until such time as death from overwork is eradicated, it is necessary to support relief for cases that have occurred and to educate society at large.

Since the 1990s, the concept of integrated care has been used to examine methods of care delivery that ensure quality while increasing efficiency. Japan has developed a service-delivery system that specializes in independent long-term care through universal public long-term care insurance to respond to the growing care needs of its aging population. This caused a fragmentation of medical care, rehabilitation, and other welfare services, and the concept of community-based integrated care was proposed as an attempt to integrate these services. As the development of the welfare system for older adults was followed by the development of support for various target groups such as the needy, children and families, and people with disabilities, the concept of community-inclusive society was proposed in the context of the need to overcome the vertical system that characterized the welfare system in Japan. This concept of community-based inclusive society can be explained as including the Japanese concept of integrated care, in which community-based integrated care is provided regardless of the target population, and the concept of community building, which is promoted through collaboration between “supporters and receivers of care” or “people and communities”. Efforts to build an integrated support system to achieve community-based inclusive society have been a policy initiative since FY2016, and the Multilayered Support System Improvement Project by the municipality has just begun in FY2021. In order to facilitate the building of this system, the project is expected to identify ways to develop strategies and initiatives in the project that reflect historical, cultural, and social factors in the region.

As Japan progresses toward a “super-aging society,” long-term care facilities will become increasingly important, as they will be needed to provide effective long-term healthcare services to elderly people in need. In promoting patient safety initiatives, “reporting first” is essential to address accidents in a timely manner. In Japan, a national accident reporting system, the Project to Collect Medical Near-Miss/Adverse Event Information, was launched in 2004, and the Medical Accident Investigation System was launched in 2015. Meanwhile, the information on accidents that local governments gather from long-term care facilities is not necessarily utilized for safety among the affected population. For this reason, efforts are being made to standardize reporting forms and strengthen the safety management system at these facilities, with a view to establishing a system to utilize this information at the national level in the future. Further, from interview data on the status of efforts at long-term care facilities, it is clear that more initiatives are needed at both the facility and municipal levels to develop a coordinated system to prevent accidents (reporting, analysis, planning of countermeasures, implementation, evaluation, etc.). There is a need for training multiple professionals, including users and their families, for collaboration in long-term care patient safety. This paper offers an overview of the current state of patient safety undertakings in long-term care settings in Japan today.

This paper describes recent trends in the fields of disaster epidemiology, social epidemiology, and birth cohort research. The experience of the Great East Japan Earthquake in 2011 has attracted attention to disaster epidemiology. Social epidemiology aims to identify social environmental exposures associated with various physical and mental health outcomes. Birth cohorts are often differentially affected by social events. Epidemiological research methods are used in a wide range of fields, and can be expected to continue to develop in the future. In addition, it is expected that the results of various epidemiological studies will be implemented in society.