The feds want to give consumers more control over their data — are healthcare organizations prepared?

The feds want to give consumers more control over their data — are healthcare organizations prepared?

July 12, 2019
Health IT
By Cristin Gardner

2019 is shaping up to be a pivotal year for healthcare consumerism and interoperability. In February, the Office of the National Coordinator for Health IT (ONC) and the Centers for Medicare and Medicaid Services (CMS) released two eagerly anticipated rules focused on giving patients greater access and control over their own health information. The control covers both clinical (electronic health records) and administrative (insurance claims) data.

That policy push was followed up in May with the Department of Health and Human Services (HHS) Office of Civil Rights (OCR) releasing expanded guidance for sharing data with patients under the Health Insurance Portability and Accountability Act (HIPAA). HHS OCR clarified that when a patient shares protected health information with a third-party app or requests their healthcare provider share their health data with an app, the provider organization is not liable for any subsequent use or disclosure of the data and is obligated to comply with the patient request.

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These recent moves underscore the big changes that are being driven by three forces converging: government mandates, tech giants seeking to disrupt healthcare, and rising consumerism. Every other industry has been transformed by the digital revolution — shopping, financial services, entertainment, you name it. Healthcare, on the other hand, has been intractable against these forces that were changing everything else around it. Now, healthcare must play catch-up to meet a new level of consumer demand for data access, portability, simplicity and usefulness.

Take women’s breast health as an example. Every single woman has unique breast tissue and comparisons to prior mammograms are necessary in order to determine what is normal for each woman over time. Despite the importance of priors, one in four women do not have access to their priors at the time of screening, which leads to callbacks, unnecessary duplicate testing and anxiety. Even more disconcerting is that women diagnosed with breast cancer will show up without their records to their oncology appointment.

One reason is that women are not aware of the importance of prior mammograms for comparison. The other major reason is that 80 percent of provider offices are still sharing patient records and diagnostic images using a CD. Or, worse, they are sharing records with hard copies and faxes. Those outdated technologies are not easily shared, and no longer functionally exist in the consumer world.

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