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SXSW: Preventing the Cambridge Analytica of Health Data

March 8, 2019

In the future, your medical prognosis may be predicted by data from fitness monitors, genetic testing kits, insurance databases, web searches, or even your cell phone’s GPS. Want to participate in a clinical trial? No need to visit the doctor’s office, just click “I agree,” and you’re enrolled! Taking healthcare digital is exciting — it has the potential to expand beyond the academic medical center and the traditional clinical trial. It can also democratize research by making studies more accessible to underserved and remote communities, making data more diverse and inclusive. But as we freely share our information, and as tech companies edge into the healthcare sphere, what protections are needed for ourselves, and our data?

Jennifer Miller, Yale University School of Medicine
Brooke Grindlinger, The New York Academy of Sciences
Regina James, 2M Research
Jessica Mega, Verily Life Sciences


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2019 Health Datapalooza, Panel: A Solutions Approach to Data Privacy and Ethics

March 28, 2019 3:20-3:50 p.m.

This panel will bridge practical, legal and regulatory perspectives to solving privacy and ethics challenges related to broader integration of data sources, recruitment and consent, data ownership and social responsibility.

Moderator: Jodi Daniel, Partner – Crowell & Moring

Location: Washington, D.C.


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New York Times interviews our founder, Jennifer Miller, on FDA's clinical trial transparency pilot

The New York Times interviewed our founder, Jennifer Miller, on FDA Commissioner Dr. Scott Gottlieb's clinical trial transparency initiatives. She discussed his new pilot, launched last month, which selects 9 recently-approved drugs, whose sponsors (generally pharmaceutical companies) volunteer to participate, to post portions of Clinical Study Reports (CSRs) from their pivotal trials on FDA's website…

February 12, 2018

Big Data Probably Knows More About You Than Your Friends Do

This week we focused on the ethics of Big Data, publishing an article titled, Big Data Probably Knows More About You Than Your Friends Do, in Leaps Mag. The article discusses the promises and perils of big data and concludes with a way to manage your data wealth.  To read the full article click here.

February 7, 2018

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Availability of Investigational Medicines Through the US Food and Drug Administration’s Expanded Access and Compassionate Use Programs

Jeremy Puthumana, MS; Jennifer E. Miller, PhD; Jeanie Kim, JD; et al Joseph S. Ross, MD, MHS. JAMA Network Open. 2018;1(2):e180283. doi:10.1001/jamanetworkopen.2018.0283
The Right to Try Act of 2017 allows patients with life-threatening conditions to access investigational medicines outside clinical trials without oversight from the US Food and Drug Administration (FDA). A better understanding of existing expanded access programs can inform the consideration and implementation of both the federal Right to Try Act and state right-to-try laws.

Measuring clinical trial transparency: an empirical analysis of newly approved drugs and large pharmaceutical companies

Miller JE, Wilenzick M, Ritcey N, et al. Measuring clinical trial transparency: an empirical analysis of newly approved drugs and large pharmaceutical companies. BMJ Open 2017;0:e017917. doi:10.1136/ bmjopen-2017-017917

Cross-sectional descriptive analysis of all clinical trials supporting 2014 Food and Drugs Administration (FDA)-approved new drug applications (NDAs) for novel drugs sponsored by large companies.

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Press and Media Inquires

Press and media inquiries can be directed to:

Maggie Beller, Russo Partners LLC

Jennifer Miller, Yale School of Medicine