Building Trust In the Health Data Ecosystem

Author: Jen Goldsack 


Pending bipartisan “Cures 2.0” legislation is intended to safely and efficiently modernize healthcare delivery in the wake of the novel coronavirus (COVID-19) pandemic. Such modernization is contingent on access to high-quality data to power innovation and guided decision-making. Yet over 80% of Americans feel that the potential risks of companies collecting their data outweigh the benefits. To ensure the success of Cures 2.0, provisions must be added that bolster public trust in how health data are used.

Addressing the largely unregulated activities of data brokers—businesses that collect, sell, and/or license brokered personal information—offers a budget-neutral solution to the public’s crisis of faith in privacy. Building a well-governed health-data ecosystem that the public can trust is essential to improving healthcare in the United States.

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About the Author

Jen Goldsack co-founded and serves as the Executive Director of the Digital Medicine Society (DiMe), a 501(c)(3) non-profit organization dedicated to advancing digital medicine to optimize human health. Jen’s research focuses on applied approaches to the safe, effective, and equitable use of digital technologies to improve health, healthcare, and health research. She is a member of the Roundtable on Genomics and Precision Health at the National Academies of Science, Engineering and Medicine. Jen holds a master’s degree in chemistry from the University of Oxford, England, a masters in the history and sociology of medicine from the University of Pennsylvania, and an MBA from the George Washington University.