Patient Data Accessibility for Biotech and Medicine Industry Start-ups in Taiwan

Wei Jeng; Zih-Han Wang; Wayland Chang

doi:10.6182/jlis.202112_19(2).025

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人文学 > 图书资讯学

DOI： 10.6182/jlis

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Patient Data Accessibility for Biotech and Medicine Industry Start-ups in Taiwan

生物科技与医药新创产业社群中的病患资料近用性

郑玮(Wei Jeng) ；王姿涵(Zih-Han Wang) ；张维庭(Wayland Chang)

图书资讯学刊； 19 卷 2 期 (2021 / 12 / 01) ， P25 - 41

英文 DOI： 10.6182/jlis.202112_19(2).025

Health Data ； Data Accessibility and Reusability ； Data Infrastructure ； Biotech and Medicine Industry Startups ；健康资料；资料近用与资料再用；资料基础建设；生物科技与医药新创产业

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摘要 │ 参考文献 (14) │ 国际计量

摘要〈TOP〉

In Taiwan's current biotechnology and medicine industry (BMI) landscape, there exists a data accessibility-ethical dilemma that might lead to an overall health data accessibility and availability supply-demand gap. Focusing on Taiwanese BMI startups' perceived data accessibility, this article-with a qualitative approach-altogether analyzed such startups' current challenges and circumstances. We conducted semi-structured interviews with 17 participants as different stakeholders, including 4 physicians, 5 BMI startup workers, and 8 with both roles. Also analyzed were several actual data accessibility issues that Taiwan's BMI startup community often encounters during data acquisition. Ultimately, this study confirms a rather inconvenient truth that data acquisition costs are rather very high - not only in monetary-wise, but also perceived efforts-wise in response to Taiwan's rather rigid biotechnology regulatory regime. Also found were that many of the interviewed BMI startups had voiced hopes for more regulatory transparency plus well-roundedness than those of more regulatory relaxations. With an interview approach, we found still more rooms of improvement in the realms of the startup itself, BMI startup accelerators, and government in Taiwan. Thus, this study has three recommendations: First, better startup's data literacy to better respond to relevant data requests. Second, better governmental transparency and well-informed regulations. Third, about the aforesaid complex regulations, better mentorship by such startup accelerators. Also observed were startups' various proactive attempts to strike a strong ethics-development growth ethics. Thus, this study provides deeper insights into building more mutually beneficial approaches in the data accessibility issues realm for Taiwanese BMI startup communities' different stakeholders. Namely as such startups are often at the crossroads of burgeoning expansionary visions and sometimes stifling regulatory regimes.

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参考文献 ( 14 ) 〈TOP〉

Bindley, K. (2019, November 22). Your health data isn’t as safe as you think; silicon valley’s rush into the health-care business is challenging the antiquated protections of Americans’ medical histories. Wall Street Journal (Online). Retrieved from https://search.proquest.com/docview/2316736717?accountid=14229
Boyacioglu, C.,Yıldız, O.(2021).The impact of data protection regulations on start-up enterprises.Recent developments in individual and organizational adoption of ICTs
Carroll, A., & Frakt, A. (2017, December 26). The leap to single-payer: What Taiwan can teach how one nation transformed a health care system. The New York Times. Retrieved from https://www.nytimes.com/2017/12/26/upshot/the-leap-to-single-payer-what-taiwancan-teach.html
CEOWORLD Magazine. (2021, April). Revealed: Countries with the best health care systems, 2021. Retrieved from https://ceoworld.biz/2021/04/27/revealed-countries-with-thebest-health-care-systems-2021/
Chang, C. H.(2016).Controversy over information privacy arising from the Taiwan National Health Insurance Database examining the Taiwan Taipei High Administrative Court Judgment No. 102-Su-36 (Tsai v. NHIA).Pace International Law Review,28(1),29-116.

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