Grass-Roots Healthcare Reforms: Collaboration Between Patient Support Groups and Medical Professionals

Healthcare reform that responds to unmet needs is a most urgent challenge.  While many individuals and agencies, including governments, associations of healthcare professionals and lawyers have worked to solve these problems, the collective action of people with illnesses and disabilities and their families is just as important.  The aim of this study is to examine how patients’ support groups change and help to create healthcare services that satisfy what they want and suit their needs, by examining the activities of two organizations: one for people with sarcoma (a sort of cancer), and the other for ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) focusing on their advocacy activities.  The advocacy activities of these groups can be called Health Social Movements.

According to my previous survey, patients expected that the groups’ activities would change governmental healthcare policy, provide adequate medical and social services and eliminate discriminative perceptions against their disabilities.  But there are so many obstacles they must face until their expectations are realized.  However, these case studies showed that the advocacy activities of patients groups have actually achieved their goals to change the healthcare settings.  The sarcoma support group persuaded medical professionals to establish a sarcoma center at hospitals to provide appropriate medical access for the patients.  The ME/CFS support group has convinced medical professionals to conduct scientific research on the disease and government workers to set reasonable social services. 

This study suggests that the advocacy activities of the groups are becoming increasingly important for both the patients themselves and healthcare providers.  A sign of social transformation of the healthcare structure, from a bureaucrat-driven one to a civilian-driven one, can be seen in this study.  This process of people’s involvement should be a key factor in the design of a more effective and sustainable healthcare system in the future.