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  • 學位論文

由風險治理之觀點論電子病歷決策

Electronic Medical Records Policy-making: A Risk Governance Perspective

指導教授 : 周桂田

摘要


本研究從風險社會理論與風險治理角度,闡述資訊科技衍生的社會系統風險 癥結。從 2012 年愛滋器捐事件,HIV 病症/身份是否註記健保 IC 卡的爭議,作 為本研究思考起點。試圖將科技、社會與風險的互動,放置在資訊風險治理與反 身性行動的架構之中,進一步考察電子病歷決策的風險治理以及公民社會對政策 的反饋。在第二章理論與文獻回顧部分,首先建構出風險社會的樣貌。接著從實 際的風險治理操作與反身性行動,考察科技與社會互動之政治、文化、倫理辯證。 接著在第三章以國民卡、按捺指紋、健保 IC 卡等歷史決策作為實際考察。析理 臺灣在資訊科技政策的風險治理脈絡,並發現一連串政策之間有延續、接替的路 徑。此三個案例之間只有健保 IC 卡勉強順利上路,因此耙梳當時的社會脈絡與 治理結構,察覺政府對風險治理的遲滯與忽視。各個案例之間反覆複製其技術官 僚主導的治理原型。加上封閉決策形式,導致公民社會內部爆發對治理不信任的 反身性風險行動。 第四章接續到本研究的核心主軸「電子病歷」政策,該章分析其決策發展脈 絡,理解國家企圖整合健康資訊的計畫願景。呈現電子病歷的效益、風險與相關 法規制度的缺陷,突顯病歷電子化的政策架構仍有可改進之處。並檢視電子病歷 決策階段政府忽略風險評估、風險溝通等治理重要性。接著將電子病歷、醫療雲、 健康與醫療資料加值等當前國家計劃進行串聯,思考醫療健康資訊整合,是否讓 風險缺口產生隱私、資訊自主、疾病烙印等問題。 最後,在第五章與政策利益相關人進行深度訪談,受訪成員包含醫師、HIV 感染者、人權團體、愛滋權益團體、社運人士。藉由他們所處的社會位勢與觀點, 論證病歷電子化隱含的潛在風險問題。並串聯第三章的資訊科技案例銜接電子病 歷、健康資訊加值政策。整體探討台灣對資訊風險感知矛盾狀態,進而批判國家 對高科技風險治理的遲滯與依法行政的推諉。導致社會系統無法讓政策監督、風 險溝通機制形成良好的互動運作。最後,社會行動者、公民團體提出另類政策參 與模式,包含遊說與民間智庫資源形成知識節點,企圖突破傾斜的「重科研、輕 風險」決策治理結構,促使國家決策典範轉型至科技民主化之可能。

並列摘要


This research, with the viewpoints of risk society theory and risk governance, aims at social system risk as the result of information technology. Inspired by the event of AIDS organ donor in 2012, I started with the controversy of whether HIV should be on record (with NHI IC card). Interaction among technology, society and risk were put under the framework of information risk governance and reflexive action, and then we examined the risk governance of electronic medical records policy-making and the policy feedback of public society. On the part of theory and literature in chapter 2, risk society was constructed. Through risk governance and reflexive action, political, cultural and ethical debates of technology and social interaction were examined. In chapter 3, historical policy making such as smart national ID cards, fingerprinting and NHI IC cards were examined. I analyzed and tracked Taiwan’s risk governance on information technology policies, finding coherence among these polices. Only NHI IC cards turned out to be successful. With the use of social context and governance structure, I examined government’s delay and ignorance of risk governance. Each case came with technocrat. With conservative policy-making, reflexive risk action burst out due to public society’s distrust of governance. Chapter 4 aims at the core of this research, the policy of electronic medical records. I analyzed policy development, trying to realize the nation’s intention of integrating health information. Benefits of electronic records and flaws of risk and related regulations highlighted the potential of the policy-making for improvement. Government’s ignorance of risk assessment and risk communication was examined during the process of policy making on electronic records. Contemporary nationwide plans focus on incorporating electronic medical records, medicine/health in the cloud, health/ medical information application. Some issues like health/medical information integration, privacy, information right of self-determination and stigma of illness were also discussed. In chapter 5, I conducted deep interviews with policy related stakeholders, including medical doctors, people infected with HIV, AIDS groups, human rights groups and social activists. I discussed the potential risks of electronic medical records through stakeholders’ social status and perspective. And then I connected information technology with electronic medical records, health/ medical information application. Discussions about information risk perception revealed that Taiwanese residents show mixed feelings. I also gave critics on the nation’s delay of technology risk governance and irresponsibility for administration according to law. Therefore, the social system failed to have positive interaction between policy supervision and risk communication mechanism. Social activists came up with alternative policy participation modes, including lobbying and civil think tanks. They intended to fight against the policy structure of “valuing scientific research and neglecting its risk”, making it possible to transform the nation’s policy into technology democratization.

參考文獻


周桂田(2003) 〈從「全球化風險」到「全球在地化風險」之研究進路:對貝克理論的批判思考〉。《台灣社會學刊》,31,153-188。
簡里蓮(2008) 《RFID技術之隱私議題探討》。新竹:清華大學科技法律研究所碩士論文。
楊采文(2009) 《從無線射頻識別技術再思考隱私的概念》。臺北:臺灣大學國家發展研究所碩士論文。
林國明(2002) 〈朝向醫療社會學創造性的對話與整合:『醫療與社會』專題導論〉。《台灣社會學》,3,6。
成令方(2002) 〈醫『用』關係的知識與權力〉。《台灣社會學》,3,11-71。

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