Google made headlines this week: “The HHS Office for Civil Rights said it will initiate a federal inquiry into Google's Project Nightingale, a program the company set up to gather and analyze personal health information from millions of Americans through a partnership with Ascension.” HHS wants to ensure Health Insurance Portability and Accountability Act (HIPAA) protections were fully implemented. While we don’t have any more insight to the case other than what has been reported, the story got us thinking about consumer health care data issues we can expect to face in the future.
It is inevitable that consumers will have greater and easier access to their health care data. HIPAA allows consumers to request their health information and requires health care providers and health plans to share the information. Over the summer, we blogged about the Carin Blue Button technology, which allows consumers to import their health care data into applications that they select. Currently available for Medicare members, it will soon be made available to those covered by private insurance.
What’s important to know is that once a patient has his or her own health data, that data is no longer covered by HIPAA for privacy reasons. HIPAA protects patients from providers and health plans releasing/sharing/misusing personal health information. But once patients make personal decisions to take ownership of their health data, they become responsible for where and how the data is stored, what they do with the data, and who they want to share it with.
As a whole new world of digital health tech opens, these are interesting issues to contemplate. Digital tools are powered by data. The role of the consumers, how much they know about their rights – and how they choose to interact with digital tools when it comes to their individual data -- will be of central importance to many employer digital health initiatives.
There’s a call to action for employers here. As the saying goes, “if you are not at the table, you are on the menu.” Employers have long had a stake in data access and sharing issues. We can’t shy away from new opportunities that could be of mutual benefit to our employees and our organizations. Mercer will continue to share our ideas and what we are doing to help support employer and consumer data sharing.
Written by Tracy Watts & Scott Rabin