A Snapshot Of The COVID-19 Data Sharing Ecosystem

While health care entities continue harvesting valuable COVID-19 data on patients, third-party companies are eagerly awaiting the day when they can claim useful electronic health records for themselves.

The Pillars Of Biomedical Research: Ivo Dinov, PhD, the associate director for education and training of the Michigan Institute for Data Science, says biomedical research is reliant on heterogeneous big data, scientific discovery, and commitment by entities to drive forward innovation.

“Deficiency in any one of these three pillars may significantly decapitate future progress, slow the translation of scientific discoveries into pragmatic experiences, stall, or even reverse recent gains,” he says.

Funding and cooperation are key, Dinov said — along with data sharing.

Researchers are deeply interested in the novelty of the coronavirus and its preliminary and lasting effects on patients of varying demographics. Big pharma players like Johnson & Johnson JNJ and Pfizer Inc. PFE are developing, testing and working on plans to distribute emergency use vaccines as soon as possible.

Johnson & Johnson said last week it's on track to begin human trials of its vaccine candidate in July.

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HIPAA Roadblocks: To accelerate research and development efforts, companies need access to large quantities of patient data related to the disease.

The Clinton-era Health Insurance Portability and Accountability Act (HIPAA) heavily regulates the distribution of confidential data and protects patient privacy.

Due to the severity of the coronavirus pandemic, an alliance of health care companies, research groups and data analytics entities worked together to release the COVID-19 Research Database. This HIPAA-compliant resource allows small and medium enterprises and researchers to interact with limited data for nonprofit, non-commercial purposes.

Violations of HIPAA and similar regulations are taken seriously. Physicians Practice reported that 418 HIPAA breaches resulted in almost 35 million Americans having their protected health information compromised in 2019.

Last year, Alphabet Inc. GOOGL became embroiled in a lawsuit with the University of Chicago Medical Center over failure to comply with HIPAA when receiving patient data, according to The New York Times.

Michigan Medicine is also stepping up to the plate to help advance health research through acceptable practices of patient data sharing. Kayte Spector-Bagdady, J.D. and her team developed an improved framework to obtain patient consent in sharing their personal information, according to The New England Journal of Medicine.

The uncertainty of COVID-19 moving forward may inspire leaders in health care to rethink how patient data is handled. These decisions may have repercussions that extend past health care and into the more commercialized industries of data sharing and online advertisement.