6
report
Demographic Reporting and Mix in Clinical Trials
Clinical trial enrollment can vary based on demographics. Cancer drug trials, for example, have bee
n shown to skew disproportionately toward young, White, male participants.
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report
Data Governance for Early Warning Systems
The COVID-19 pandemic resulted in the proliferation of new data that have created unprecedented opp
ortunities to establish early warning systems for pandemics.
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article
Tech Regulation Digest: Big Tech, HIPAA, and the GDPR: Balancing Patient Privacy and Data Sharing in Health Tech
Overview
As Big Tech companies face continued scrutiny over their handling of personal health infor
mation, the limitations of US health privacy regulation in a digital age are becoming more evident.
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video
December 6 at 10:30 am EST | Foundations as Trusted Intermediaries for Patient Data Resources
Analyzing data from and about patients is essential to advance biomedical research, but its collec
tion and dissemination require significant investment of time and resources for patient organizations that choose to be the intermediary.
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video
December 6 at 12:30 pm EST | The Path Forward for Patient-Focused Product Development and Use of Patient Input in Decision-Making
Consideration of patients' needs, experiences, and perspectives can contribute to medical product
development processes, as well as inform regulatory and access decision-making.
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video
December 6 at 12:30 pm EST | Why Is It Still So Hard for People to Get Their Health Data?
Patients are the source, active or passive, of most of the data driving discovery and innovation i
n biomedical R&D and improvements in care.
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