The question of whether using data gathered through the National Health Insurance (NHI) program intrudes on personal data privacy is an ethical and legal issue, but any decision about whether to allow the use of such data should be based on whether any such infringement has ever happened, rather than on the suspicion that it might happen in the future.
I might have been using this kind of data for longer than anyone else in Taiwan. In 1980, when I was in the US doing further studies in the field of environmental epidemiology, I gained my first experience of big data research by contributing to a survey of environmental pollution in 32 big cities and linking pollution data for each of the cities with their vital statistics data.
I went on to teach for 10 years at the Atlanta University Center Morehouse School of Medicine, where I spent three days a week at Emory University and the US Centers for Disease Control and Prevention (CDC), using data from the USNCI’s Surveillance, Epidemiology, and End Results Program cancer registries, together with vital statistics data, Medicaid data and birth data, to conduct research into racial health disparities.
For example, we investigated why young and middle-aged African Americans were eight times more likely than white people of the same age group to die of high blood pressure, and why neonatal mortality risk was twice as high for black people as for whites.
The data used in this research were available upon request. The US National Institutes of Health even has a department devoted to promoting the use of big data, and the US cancer registries data are available on CD-ROM for access at any time. In the US, which takes medical research ethics very seriously, there has never been any question of prohibiting the use of this kind of big data.
There are other countries in Europe and Asia where big data from health insurance programs and other sources can be used for research and the investigation of health problems in the countries concerned. Notably, many such studies have been carried out in Denmark and South Korea, among others.
Since coming back to teach in Taiwan, I have found NHI data to be excellent material for training graduate students to conduct research, and that research into Taiwanese health issues, especially the kinds of studies that are impossible, very difficult or very expensive to do using general methods, can easily be done by using NHI data.
Most importantly, research can help to improve treatment and promote health. For example, Taiwan used to have the world’s highest prevalence of renal dialysis, but we have since gained a good understanding of this health problem, and NHI data made an immeasurable contribution to this research.
When NHI and other data have been encrypted, it is impossible for anyone but an expert computer programmer with ulterior motives to break through the privacy protections. Since 2016, any such research has to be done through the Ministry of Health and Welfare’s Health and Welfare Data Science Center, which should make it almost impossible to decrypt the data.
The question is — has it ever happened? As far as I know, it has not. If anyone is worried that such malicious computer wizards really exist, do we not have laws to prosecute them? Any such legislation can be tightened if necessary. There is nothing wrong with wanting to prevent hacking incidents, but this should not be taken as grounds for banning the use of NHI data.
Sung Fung-chang is a former professor and director of National Taiwan University’s Institute of Environmental Health and a former medical device advisory committee panel member for the US Food and Drug Administration. He is currently a professor at the China Medical University College of Public Health.
Translated by Julian Clegg
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