Health Data Accessibility: A Preliminary Study of Biotech and Medicine Industry Startup Stakeholders

摘要

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.