Should health information in EHRs be provided for informational…

by | Mar 29, 2024 | HIMT-1200

  • Should health information in EHRs be provided for informational research without notice to patients and express consent?
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    • Who will control the health information in EHRs that is a central currency of 21st century informational research – consumer-driven data commons arrangements or the institutional holders of health information (such as hospitals and insurers)?
    • Should patients have a say in what will be done with their health information informational research? Do the HIPAA Privacy Rule and the Common Rule give patients a say?
    • Do patients have alternatives, other than walking away from informational research, if they have misgivings about the privacy protections institutional review boards (IRBs) and regulators arrange for them? Is walking away from informational research the same as having a say with which to negotiate the purposes, terms, and conditions of research that uses one’s health information?

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