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

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...

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Autores principales:	Wei Jeng, Zih-Han Wang, Wayland Chang
Formato:	article
Lenguaje:	EN ZH
Publicado:	National Taiwan University 2021
Materias:	health data data accessibility and reusability data infrastructure biotech and medicine industry startups Bibliography. Library science. Information resources Z
Acceso en línea:	https://doaj.org/article/9e3992eb94d74c208300c58d3eabec25
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spelling	oai:doaj.org-article:9e3992eb94d74c208300c58d3eabec252021-12-01T14:10:18ZPatient Data Accessibility for Biotech and Medicine Industry Start-ups in Taiwan10.6182/jlis.202112_19(2).0251606-7509https://doaj.org/article/9e3992eb94d74c208300c58d3eabec252021-12-01T00:00:00Zhttps://jlis.lis.ntu.edu.tw/files/journal/j53-2.pdfhttps://doaj.org/toc/1606-7509In 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.Wei JengZih-Han WangWayland ChangNational Taiwan Universityarticlehealth datadata accessibility and reusabilitydata infrastructurebiotech and medicine industry startupsBibliography. Library science. Information resourcesZENZHJournal of Library and Information Studies, Vol 19, Iss 2, Pp 25-41 (2021)
institution	DOAJ
collection	DOAJ
language	EN ZH
topic	health data data accessibility and reusability data infrastructure biotech and medicine industry startups Bibliography. Library science. Information resources Z
spellingShingle	health data data accessibility and reusability data infrastructure biotech and medicine industry startups Bibliography. Library science. Information resources Z Wei Jeng Zih-Han Wang Wayland Chang Patient Data Accessibility for Biotech and Medicine Industry Start-ups in Taiwan
description	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.
format	article
author	Wei Jeng Zih-Han Wang Wayland Chang
author_facet	Wei Jeng Zih-Han Wang Wayland Chang
author_sort	Wei Jeng
title	Patient Data Accessibility for Biotech and Medicine Industry Start-ups in Taiwan
title_short	Patient Data Accessibility for Biotech and Medicine Industry Start-ups in Taiwan
title_full	Patient Data Accessibility for Biotech and Medicine Industry Start-ups in Taiwan
title_fullStr	Patient Data Accessibility for Biotech and Medicine Industry Start-ups in Taiwan
title_full_unstemmed	Patient Data Accessibility for Biotech and Medicine Industry Start-ups in Taiwan
title_sort	patient data accessibility for biotech and medicine industry start-ups in taiwan
publisher	National Taiwan University
publishDate	2021
url	https://doaj.org/article/9e3992eb94d74c208300c58d3eabec25
work_keys_str_mv	AT weijeng patientdataaccessibilityforbiotechandmedicineindustrystartupsintaiwan AT zihhanwang patientdataaccessibilityforbiotechandmedicineindustrystartupsintaiwan AT waylandchang patientdataaccessibilityforbiotechandmedicineindustrystartupsintaiwan
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Patient Data Accessibility for Biotech and Medicine Industry Start-ups in Taiwan

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