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

Volume / Date

 VOL. 19 (NO. 2) / DEC. 2021

Page

 pp. 25-41

DOI

 10.6182/jlis.202112_19(2).025

Language

 English

Wei Jeng*, Zih-Han Wang, Wayland Chang

* Corresponding Author

Wei Jeng* Department of Library and Information Science, National Taiwan University, Taipei, Taiwan
ORCID: 0000-0001-5560-511X
wjeng@ntu.edu.tw
Zih-Han Wang Information School, University of Washington, Seattle, USA
Wayland Chang Department of Library and Information Science, National Taiwan University, Taipei, Taiwan

Abstract

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.

Keywords

Health Data; Data Accessibility and Reusability; Data Infrastructure; Biotech and Medicine Industry Startups