The Constitutional Court ruled on Friday that a National Health Insurance Administration (NHIA) policy of allowing other government agencies and researchers access to its database was partly unconstitutional.
Taiwan’s single-payer health insurance was launched in 1995, and by 2014 over 99.9% of the population was enrolled. In 1998, the National Institute of Health Research was commissioned to establish a database containing information on insured persons, and anonymized files became available to researchers in 2000. In 2016, the database was returned to the Ministry of Health and Welfare and integrated into a dedicated service. center which imposed stricter privacy protections, but continued to grant access to files.
However, seven human rights defenders in 2012 asked the NHIA to limit access to the database. When the agency did not comply, they sued the NHIA. Their request was denied, but they appealed the initial decision, as well as subsequent rulings in favor of the NHIA by higher courts. After the Supreme Administrative Court denied their request in 2017, they sought constitutional interpretation, arguing that granting access to highly sensitive personal information without people consenting to their files being used violates the right to privacy and the principle of self-determination of information.
The NHIA said entities wishing to access the files must go through an application process, which ensures confidentiality and that the purpose for which the files are used must be in the public interest. The ministry added that if individuals were allowed to have their files deleted or kept secret, researchers would face sampling bias, harming studies that are in the public interest. He said the database has also helped the government implement effective policies to curb the spread of COVID-19.
However, 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 health data and sets criteria for its use by government agencies and institutions academics – has no independent governance mechanism. He also ruled that the National Health Insurance Act (全民健保法) is partly unconstitutional because it does not stipulate how the NHIA can record, process and share health data, and does not define requirements for entities that access it. He called on the NHIA to update its rules within three years and add an option for people to opt out of third-party use of their data.
The NHIA has often touted Taiwan’s health insurance system as an invaluable asset. The agency said access to the database has contributed significantly to health policy planning, health research, drug discovery and disease prevention, adding that 6,550 articles scholars using the database had been published in international journals from 1995 to March last year.
The Constitutional Court ruling highlights the dilemma of health data sharing and the need for the government to find a solution. If large numbers of people opted out of having their data used by third parties, it could compromise healthcare decision-making and slow down clinical research and drug development.
Last year, the UK government sought to grant researchers and healthcare companies access to its health insurance database. It introduced an opt-out process, but after more than a million people opted out of third-party use within a month, it stopped rolling out the program.
In Taipei, the government can no longer conveniently use the ambiguous claim of “public interest” to justify access to its database. Instead, he must convince the Taiwanese that using their data is in their interests. It needs to reassess application criteria for data access, address privacy concerns, and clearly communicate how it ensures data is only used for the right purposes.
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