EDITORIAL: Medical health insurance data need protection

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The Constitutional Court on Friday ruled that a National Health Insurance Administration (NHIA) policy of allowing other government agencies and researchers to access its database is partly unconstitutional.

Taiwan’s single-payer medical insurance was launched in 1995, and by 2014 greater than 99.9 percent of the population was enrolled. In 1998, the National Health Research Institute was commissioned to determine a database with information on insurance holders, and anonymized files became accessible for researchers in 2000. In 2016, the database was returned to the Ministry of Health and Welfare and integrated with a dedicated service center that imposed tighter privacy protections, but continued to grant access to the files.

Nevertheless, seven human rights advocates in 2012 asked the NHIA to limit access to the database. Because the agency didn’t comply, they sued the NHIA. Their claim was rejected, but they appealed the initial decision, in addition to ensuing decisions in favor of the NHIA by higher courts. After the Supreme Administrative Court in 2017 rejected their claim, they filed for a constitutional interpretation, arguing that granting access to highly sensitive personal information without people consenting to their files getting used breaches privacy rights and the principle of data self-determination.

The NHIA said that entities searching for access to the files must undergo an application process, which ensures privacy and that the aim for which the files are used have to be in the general public interest. The ministry added that if individuals were allowed to have their files deleted or kept secret, researchers would face a sampling bias, harming studies which are in the general public interest. It said the database also helped the federal government implement successful policies to curb the spread of COVID-19.

Nevertheless, the Constitutional Court ruled that Article 6 of the Personal Data Protection Act (個人資料保護法) — which requires the encryption of healthcare data, and sets criteria for his or her use by government agencies and academic institutions — lacks an independent governing mechanism. It also ruled that the National Health Insurance Act (全民健保法) is partly unconstitutional, because it doesn’t stipulate how the NHIA can save, process and share healthcare data, and doesn’t define requirements for entities accessing it. It asked the NHIA to update its rules inside three years and so as to add an option for people to say no using their data by third parties.

The NHIA has often touted Taiwan’s medical insurance system as a useful asset. The agency said database access has significantly contributed to healthcare policy planning, health research, drug discovery and disease prevention, adding that 6,550 academic papers using the database had been published in international journals from 1995 to March last yr.

The Constitutional Court’s ruling highlights the dilemma of sharing healthcare data, and the necessity for the federal government to search out an answer. If numerous people were to say no third-party use of their data, it would compromise healthcare decisionmaking, and decelerate clinical research and drug development.

The British government last yr sought to grant researchers and healthcare corporations access to its medical insurance database. It introduced an opt-out process, but after greater than 1 million people declined third-party use inside one month, it stopped this system’s rollout.

In Taipei, the federal government can not conveniently use the ambiguous “public interest” claim to justify granting access to its database. As a substitute it must persuade Taiwanese that using their data is of their interest. It must reassess the appliance criteria for data access, address privacy concerns and clearly communicate the way it ensures that the information are only used for the appropriate purposes.

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