病患權益倡導的參與式行動研究：以罕見疾病基金會為例

A Participatory Action Research on Advocacy for Patient Rights: The Case of Taiwan Foundation for Rare Disorders

曾敏傑(Min-Chieh Tseng)

《東吳社會工作學報》 11期 (2004/12) Pp. 139-195

https://doi.org/10.29734/SJSW.200412.0004

摘要

本文嘗試運用參與式行動研究方式，針對我國六年來罕見疾病相關體制變革提出回顧，觀察罕見疾病基金會在病患權益爭取與社會倡導上的角色，以及所致外部社會環境的產出和變遷。相關資料庫檢索顯示，「罕見疾病」一詞過去並不存在民眾的生活意象中，但伴隨著罕見疾病基金會籌備處於1998年6月開始運作，已引發諸多的制度變革與社會變遷，其中包括2000年立法通過「罕見疾病防治及藥物法」、2001年修訂「身心障礙者保護法」納入罕病、2002年罕病納入健保「重大傷病」、2004年健保實施罕病「專案專款」加以保障等。本研究發現罕見疾病基金會具有「病患團體」爭取病患權益的特性，同時也具有「倡導團體」改變社會結構的行動，其組織特性與運作內容與我國一般之病患團體有所不同，也與英美病患團體的特性存在差異。本研究案例也顯示，弱勢團體經由結社、發聲、賦權、行動、與協力的過程，不僅可能爭取到即時的自我權益保障，也可能改變原初造成其困境的不正義社會結構。

關鍵字

罕見疾病 ； 社會立法 ； 社會倡導 ； 病患團體

並列摘要

Using the approach of participatory action research, the major purpose of this study was to review the development of social issues on rare disorders in Taiwan between 1998 and 2004. The observations and discussions have focused on the roles of Taiwan Foundation for Rare Disorders (TFRD), concerning about her efforts to pursue patient rights and to advocate for patients with rare diseases, as well as the consequences of social changes due to the process. Obviously, the social issues on rare disorders were initiated by the TFRD in 1998. Since then, there have been significant medical reforms on regulations to protect the patients suffered from rare diseases, such as the passing of ”The Act of Rare Diseases and Orphan Drugs” in 2000, the partial modification of ”The Act of Protection toward the Handicapped” in 2001, the inclusion of rare diseases into the category of ”Critical Diseases” in National Health Insurance Bureau (NHIB) in 2002, and a planning of ”Global Reserved Account” in 2004 for rare disorders in NHIB. Finally, the study also compared the similarities and differences of characteristics between TFRD and the patient groups in UK, US, and Taiwan.

並列關鍵字

Rare Diseases ； Social Legislation ； Social Advocacy ； Patient Groups

參考文獻

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