Finger print data Health care leaders fear that freeing up data may lead to apps that could sell or exploit personal data, perhaps without individuals being aware of it. (Image: Shutterstock)

Patients should have unfettered access to their health data—right? Although many in the health care world would agree, a significant number of stakeholders are expressing concerns about the possibility that easing controls and regulations may result in data being exploited or misused.

A recent move by the U.S. Health and Human Services Department (HHS) to give patients or consumers more control over their health care data has some health care experts worried that the government may be opening a Pandora's Box that could have unexpected and undesirable outcomes. They say patients may not understand how their data could be used and shared, and advocate slowing down or adding more protections to the HHS approach for data sharing.

Regulators moving forward with IT reform

Federal regulators have for some time been working on a way to modernize data sharing systems in the U.S. The Office of the National Coordinator (ONC) has been finalizing new regulations to streamline and clarify sections of the Trusted Exchange Framework and Common Agreement (TEFCA), as part of an HHS plan to improve health care data interoperability nationwide.

A second draft of this plan was released in April, but a number of stakeholder organizations have asked the ONC to delay the adoption of the new regulations, according to HealthCareDive. “Multiple organizations advocated that ONC push back the relatively short timeline for TEFCA adoption, especially in light of the financial and manpower burden it will place on players across the board. This includes the costs of TEFCA implementation and participation; staffing; privacy and security modifications; contractual changes; education and training; and other issues,” wrote Rebecca Pifer on the HealthCareDive website.

Increased data sharing vs. privacy concerns

Privacy is one of the big issues for many industry groups. According to a recent Politico review of the issue, health care leaders fear that freeing up data could lead to apps that could sell or exploit personal data, perhaps without individuals being aware of it.

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