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 health insurance was launched in 1995, and by 2014 more than 99.9 percent of the population was enrolled. In 1998, the National Health Research Institute was commissioned to establish 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.
However, seven human rights advocates in 2012 asked the NHIA to limit access to the database. As the agency did not comply, they sued the NHIA. Their claim was rejected, but they appealed the initial decision, as well as 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 being used breaches privacy rights and the principle of information self-determination.
The NHIA said that entities seeking access to the files must undergo an application process, which ensures privacy 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 a sampling bias, harming studies that are in the public interest. It said the database also helped the government implement successful 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 healthcare data, and sets criteria for their 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, as it does not stipulate how the NHIA can save, process and share healthcare data, and does not define requirements for entities accessing it. It asked the NHIA to update its rules within three years and to add an option for people to decline the use of their data by third parties.
The NHIA has often touted Taiwan’s health insurance system as an invaluable 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 year.
The Constitutional Court’s ruling highlights the dilemma of sharing healthcare data, and the need for the government to find a solution. If a large number of people were to decline third-party use of their data, it might compromise healthcare decisionmaking, and slow down clinical research and drug development.
The British government last year sought to grant researchers and healthcare companies access to its health insurance database. It introduced an opt-out process, but after more than 1 million people declined third-party use within one month, it stopped the program’s rollout.
In Taipei, the government can no longer conveniently use the ambiguous “public interest” claim to justify granting access to its database. Instead it must convince Taiwanese that the use of their data is in their interest. It must reassess the application criteria for data access, address privacy concerns and clearly communicate how it ensures that the data are only used for the right purposes.
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