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Health data accessibility: A preliminary study of biotech and medicine industry startup stakeholders
Author(s) -
Wang ZihHan,
Jeng Wei
Publication year - 2018
Publication title -
proceedings of the association for information science and technology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.193
H-Index - 14
ISSN - 2373-9231
DOI - 10.1002/pra2.2018.14505501177
Subject(s) - dilemma , business , informatics , health informatics , qualitative property , public relations , qualitative research , marketing , health care , political science , economic growth , economics , sociology , computer science , philosophy , social science , epistemology , machine learning , law
Recent research has been emerging on the issues related to health data and informatics; however, there is a dilemma between data accessibility and ethical concerns in today's biotech and medicine industry (BMI) development. Conducting a case study through qualitative interviews of nine participants, we investigate the actual practices that the BMI startup community engages in while accessing and collecting health data for their businesses, as well as the insights of those who are eager to change and improve the current environment. Our preliminary results reveal the high cost of accessing and collecting clinical data in BMI fields, not only in terms of monetary price but also the strict regulations. Interestingly, rather than merely relaxing the regulations, many BMI startups hope that the regulations become more transparent and well‐rounded.