全民健保資料庫二次利用與病患個資保護之研究

Abstract

「全民健保資料庫」是一個完整記錄全體國民醫療資料的大數據庫。全民健保有著強制性社會保險性質，全民健保資料幾乎涵蓋到全體國民所有疾病與醫療訊息，是世界上少數擁有大數據基礎的「真實世界數據（Real World Data）」資料庫，將會是我國未來發展AI智慧醫療的最重要基石。 惟數據的蒐集、處理及利用往往伴隨著對於個人資料侵害的風險，我國全民健保資料庫在利用上也遇到了相同的困境，而這些疑慮也造成了全民健保資料庫二次利用上的躊躇不前。 本文先利用仍在憲法法庭審理中的全民健保資料庫訴訟案，透過支持與反對方所持理由，整理出雙方歧異，再從現有全民健保資料庫二次利用上的成就，確認二次利用的重要性與必要性，最後由國內外相關規定中歸納出解決方案。 本文期待，藉由對現行規範的建議，消除民眾對於醫療個資被利用時所可能造成隱私侵害的疑慮，以促進全民健保資料庫二次利用的開放，用更多的研究成果帶領醫療進步，讓國人享受醫療創新所帶來的健康福祉。

The National Health Care Database is a Big Database designed to store comprehensive health care data of all citizens in the Nation. The National Health Care System was established to reinforce health insurance coverage to all in the Nation; hence the National Health Care Database documents all health care related information on every citizen in the Nation including data on diseases, illness, treatments, preventive care, etc. This database is one of its kind in the world; the magnificent amount and kinds of data stored in this database is real-world, rare and valuable. This database will serve as a foundation for our Nation to future build an innovative health care system using the artificial intelligence in the near future. However, the utilization of the data from the National Health Care Database might violate patient’s privacy. This is a universal problem across all health care database in the world, and has caused great concerns for many wish to use data from a health care database with good purposes and intents. This study investigates pros and cons of utilizing data from the National Health Care Database. Documented court cases were used as sources of data for the analysis. This study further examined past projects utilizing health care data to successfully achieve its project goals, evaluated the necessity of using those data, and identified any alternative if not using those data. Rules and regulations on utilizing healthcare data, as well as case studies involving health care data from other countries were also included in the analysis. The goals of this study are to provide recommendations to guide the Nation’s policies and regulations on utilizing the National Health Care Database, to eliminate any concerns on violating patient’s privacy, and to promote the utilization of the database. The ultimate goal of this study is to aid the development of a cohesive and comprehensive system for legally and ethically use of the National Health Care Database, which will in return benefit all citizens in the Nation.