Supporting Patient-led Initiatives to Improve Healthcare

Abstract

In modern times, the main disease structure has changed from infectious disease to chronic disease, and many people are now living with illness. Despite the patients' current situation, society still expects people with disease to behave consistently with the “Sick Role”, which Talcott Parson's previously defined. Once people are diagnosed, for example, as cancer patients, they may lose their jobs and social participation opportunities and their hope to live. To change this situation, people living with disease do a variety of things, for instance, changing their illness image and repelling social stigma, by collaborating with other stakeholders such as medical and health professionals, persons from the workplace, fellow patients, and their community. The actions undertaken by patients in cancer and ME/CFS support groups and prefectural Medical Councils in Japan as well as patients' collaboration with various stakeholders can be seen as a form of health governance. Patient-led initiatives are critical for the overall amelioration of healthcare.