Health and Medical News and Resources

General interest items edited by Janice Flahiff

As hospitals walk the tightrope of patient data-sharing, one system offers a new balance

Sharing of one’s personal health and medical data with researchers and industry raises issues of trust and privacy.
For example one might wonder if one’s health issues will be shared with advertisers or one’s health insuance. Or one might concerned that a company would profit from one’s medical record.

As hospitals walk the tightrope of patient data-sharing, one system offers a new balance

From the May 28, 2020 University of Michigan HealthLab News Release
Industry wants access to massive data troves, but patients deserve transparency and privacy; Michigan Medicine approach offers a path forward.

Tight rope


Every major medical center in America sits on a gold mine. The data they hold about their patients and research participants could be worth millions of dollars to companies that would explore it for clues that could lead to new medicines, medical technologies, health apps and more…

The crux of the [University of Michigan] system, launched in 2018, is an easy-to-understand informed consent document that research participants can choose to sign, in addition to the forms that they sign to take part in a U-M-run research project. The additional consent focuses on sharing their information, and any samples taken from them, outside the university.

They must first discuss the special outside-sharing consent form with research staff, who assess each participant’s understanding of what giving the additional consent means.

The critical passage in the form reads: “You give permission to share your samples and information with researchers around the world including those working for companies. Researchers and their organizations may potentially benefit from the sale of the data or discoveries. You will not have rights to these discoveries or any proceeds from them.”

More than half of research volunteers asked for such consent have given it. Once they do so, it opens up the possibility (with additional legal and ethical steps) for companies, foundations, medical specialty societies and nongovernmental agencies to access their samples and data to move innovation forward.

If their samples are being sought for a project with a specific company, they will be told about the project and company, though their consent applies to all approved industry use. They’re told they can revoke their consent in the future, stopping their data from being shared further.
More at the news release

June 4, 2020 - Posted by | Health News Items, Uncategorized | , , , , ,

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