Supporting Patient-led Initiatives to Improve Healthcare: An Investigation of Cancer and ME/CFS Support Groups and Prefectural Medical Councils in Japan

Supporting Patient-led Initiatives to Improve Healthcare: An Investigation of Cancer and ME/CFS Support Groups and Prefectural Medical Councils in Japan

Miwako Hosoda, Midori Hosoda
Copyright: © 2019 |Pages: 13
DOI: 10.4018/IJPCH.20190701.oa2
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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.
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1. Introduction

The relationship between medical professionals and patients, often categorized as Professions Theory, has been changing in recent years. In 1951, American sociologist Talcott Parsons defined the “Sick Role” as representing an ill person who is not only physically sick but also adheres to the specifically patterned social role of being sick. He claimed that patients should not be responsible for their own illness. Instead, they should strictly adhere to the advice of doctors (Parsons, 1951). Then in 1956, Szasz and Hollender proposed three stages in the transformation of the Doctor-Patient Relationship—“Active-Passive,” “Cooperation-Guidance,” and “Mutual Participation.” Looking back through history, the transition from “Active-Passive” relationships to “Cooperative-Guidance” and finally to “Mutual Participation” had been influenced by the emergence of bioethics, patient rights, and democratization of healthcare.

Recently, a new form of doctor-patient relationship has emerged. Patients advocate to make progress in the treatment of their diseases, spread public understanding of their conditions, and be guaranteed rights and social services. These tendencies are called “Health Social Movements (HSMs)” and are addressed in Social Movement Theory. Brown and Zavestoski (2004, 2005) claim, “The examples of HSMs demonstrate how patients, victims and their supporters have created formal/informal networks to advocate themselves and change conditions by collaborating with medical professionals, researchers, and the government.”

Professions Theory and Social Movement Theory were developed independently in the Medical Sociology discipline but the two theories intertwine in complex ways and have had many implications on research. Social movements are defined as social processes wherein actors who are linked by informal networks and who share distinct identities engage in collective action against clearly identifiable opponents (Della Porta and Diani, 2006; Diani and Bison, 2004). The opponents to a movement’s adherents and constituents are considered antagonists, and could include state, national, and corporate bodies (McAdam and Snow, 2010:6). When dissatisfaction spreads and institutions are unable to sufficiently respond, social movements develop (Della Porta and Diani, 2006:13).

While traditional social movement scholars focused on the expansion of political administrative intervention, referred to as the “new social movement” (Touraine, 1981, Mellucci, 1989), recent studies on health-related social movements show that movements target not only governmental administrative intervention but also other institutional authorities, such as medical professionals, hospitals, and research institutions (Levitsky and Banaszak-Holl, 2010:6).

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