Patients and community participation

While many people and agencies like the government, associations of healthcare professionals and lawyers have worked to solve the problems, the collective action of people with illnesses and disabilities and their family is just as important.  The aim of my paper is to examine the role and the meaning of patients’ groups (PGs) focusing on their advocacy activities.  As for data collection, I used a multi method survey including questionnaire survey, interviews and participant observations both in the United States and Japan.  I distributed 360 questionnaire sheets to members of nine PGs in both countries (180 in the US and 180 in Japan).  239 sheets were returned (response rate is 71.1 per cent).  I conducted individual interviews with 21 patients from groups of Post-Polio Syndrome, Chronic Fatigue Syndrome, Brain Injury and Stroke.  In addition, I made two focus group interviews with a stroke survivors group in Japan and in USA.  The results of questionnaire survey shows that patients had a great expectation for their groups’ activities being able to change governmental healthcare policy to provide adequate medical and social services and eliminate discriminative perception against their illness or disabilities.  Several cases showed that the advocacy activities of PGs have achieved change in governmental policy.  This study addresses that the advocacy activities of PGs is getting more important for both patients themselves and health policy making.  A sign of the social transformation of the policy making structure, from bureaucrat driven society to civilian driven one, can be seen at this study. This process of people’s involvement would be the key factor to design a sustainable and affluent healthcare system.