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| Title: | 民眾個人健康資料分享意願探討：以我國18歲至29歲青年為例
Exploring the Willingness of the Public to Share Personal Health Data: A Study of Taiwanese Young Adults Aged 18 to 29 |
| Authors: | 王家緯
Wang, Jia-Wei |
| Contributors: | 朱斌妤
Chu, Pin-Yu
王家緯
Wang, Jia-Wei |
| Keywords: | 衛生福利資料管理條例
全民健康保險資料管理條例
全民健康保險
個人健康資料
資料分享意願
Health and Welfare Data Management Act
National Health Insurance Data Management Regulations
National Health Insurance
personal health data
willingness to share data |
| Date: | 2025 |
| Issue Date: | 2025-08-04 13:35:37 (UTC+8) |
| Abstract: | 近年來，在當前大數據時代之趨勢，個人健康資料之資料數位化的(Data digitalization)的蒐集與使用所帶來的好處顯著。在我國，符合個人健康資料定義之資料，包含病歷資料與健保資料。尤其，我國擁有傲視全球的全民健康保險資料庫，具備資料數相當龐大的個人健康資料，若是能善加利用，可謂資料加值應用之寶庫。惟病歷與個人健保資料中，含有多種「個人資料保護法」（下稱為個資法）於第六條中所特別規範之個人資料（俗稱特種個資），如需進行目的外之資料加值應用，仍需遵守相關法規，確認資料當事人意願並確保其權益。因此，本研究希望探究影響民眾願意授權健保署或醫療機構，將其個人健康資料做目的外利用的因素。
本研究進行文獻檢閱並使用消費者數位化個人健康資料(PHI)關注模型為基底，參考Trinidad (2020)之架構，以個人健康資料中之個人健保資料為主、病歷資料為輔，經過專家訪談法設計出問卷架構，透過問卷調查法探究影響個人健康資料分享的因素及其影響程度。本研究使用多元迴歸模型對回收的395份問卷進行分析，研究結果發現，系統信任、利他主義正向顯著影響個人健康資料目的外利用意願；隱私關注負向顯著影響個人健康資料目的外利用意願；另外也發現不同資料分享目的的確會造成不同資料分享意願，而不同資料利用者也會在資料分享過程中對信任帶來影響。
最後，本研究依照研究結果，為我國個人健康資料目的外分享利用，以及預備制定的「衛生福利資料管理條例」提出五項政策建議：第一、完善申請資料目的外利用流程，使將來個人健康資料分享過程能有明確法規依據；第二、儘管目前設計仍以退出權方式執行，但考量民眾對分享機制的信任程度，知情同意機制仍有需要考量；第三、促進民眾對於資料目的外流程的認識，以降低隱私關注在資料分享過程中帶來的阻礙並提升民眾之信任；第四、確保資料存儲與利用流程的資訊安全，避免過去隱私侵犯經驗，影響民眾信任程度；第五、建立明確資料目的外利用回饋機制，確保資料目的外利用能促進公益，使提供者的利他主義得以實踐。
In recent years, the rise of the big data era has highlighted the significant benefits brought by the digitalization of personal health data for collection and utilization. In Taiwan, data that meet the definition of personal health information include medical records and National Health Insurance (NHI) data. Notably, Taiwan boasts a globally renowned National Health Insurance database, which contains a vast amount of personal health data. If properly leveraged, this database could serve as a valuable resource for data-driven applications and innovations. However, both medical records and NHI data contain various types of personal information specifically regulated under Article 6 of the Personal Data Protection Act (PDPA), often referred to as sensitive personal data. Any secondary use of such data beyond its original purpose must comply with relevant legal frameworks, ensuring the informed consent and rights of data subjects are protected. Therefore, this study aims to explore the factors influencing the public’s willingness to authorize the National Health Insurance Administration or medical institutions to use their personal health data for secondary purposes.
This study conducted a literature review and adopted the Model of Consumer Digitized PHI Concerns as the theoretical foundation, referencing the framework of Trinidad (2020). It focuses primarily on NHI data and secondarily on medical records. A questionnaire was developed through expert interviews and subsequently distributed to investigate the factors and their impact on individuals' willingness to share personal health data. Using multiple regression analysis on 395 valid responses, the results reveal that system trust and altruism have a significant positive effect on individuals' willingness to allow secondary use of their health data, while privacy concerns have a significant negative effect. Furthermore, the study finds that different purposes for data sharing significantly influence the willingness to share, and various data users also affect trust levels in the data sharing process.
Based on these findings, this study provides five policy recommendations regarding the secondary use of personal health data in Taiwan and the forthcoming Health and Welfare Data Management Act:
1. Improve the procedures for applying secondary use of data to establish clear legal foundations for future data sharing processes.
2. While the current mechanism primarily operates on an opt-out basis, the adoption of an informed consent mechanism should be considered to enhance public trust.
3. Promote public awareness of secondary data use processes to reduce privacy concerns and strengthen trust in data sharing mechanisms.
4. Ensure information security throughout data storage and utilization processes to prevent past privacy breaches from undermining public trust.
5. Establish a clear feedback mechanism for the secondary use of data to ensure that such use serves the public good, thus fulfilling the altruistic intentions of data providers. |
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| Description: | 碩士
國立政治大學
公共行政學系
111256007 |
| Source URI: | http://thesis.lib.nccu.edu.tw/record/#G0111256007 |
| Data Type: | thesis |
| Appears in Collections: | [公共行政學系] 學位論文
|
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| 600701.pdf | | 5145Kb | Adobe PDF | 2 | View/Open |
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