By Deborah Borfitz

March 28, 2019 | The website of the Office of the National Coordinator for Health Information Technology talks a fair amount about consumer-mediated health information exchange (HIE). The trouble is, there’s no sign of its existence in the real world, according to Thyge Knuhtsen, director of healthcare solutions for AT&T and a former blockchain architect.

All the necessary technology exists to make it a reality, Knuhtsen quickly adds. What has yet to happen is for a state or municipality to step into the role of “claim issuer” of a distributed, immutable ledger for self-sovereign identity (SSI)—but the odds are better than some might think.

Knuhtsen predicts the first consumer-mediated HIEs will emerge in about two years and federated blockchain, whereby multiple organizations steward and secure a business transaction network, will play a starring role. Reputable corporations with more brand trust than “John Doe in Alabama or a corporation Russia [e.g., Bitcoin]” might use the technology to create a public utility that stores identity certificates on behalf of individuals.

The federal REAL ID law is already collecting identifying credentials on people obtaining a driver license, he points out. Distributed ledger technology of the Sovrin Network could publish a signature to those digitally archived assets so individuals could prove they are who they say they are to anyone, for any purpose, on the internet.

When that happens, patients will no longer have to trudge to the doctor’s office and show their credentials before they can obtain a copy of their medical record to share with another care provider, Knuhtsen says. And that can be a big problem to do digitally if the patient is in Maine requesting information from a provider in Florida.

“I don’t believe in a lot of applications of blockchain, but I think this one is the correct way to implement a consumer-mediated exchange,” Knuhtsen says. If data are stored using a personal cloud platform like Amazon Web Services, personal health information (PHI) could be shared via a business associate agreement and be protected under the Health Insurance Portability and Accountability Act (HIPAA) and Health Information Technology for Economic and Clinical Health (HITECH) legislation. PHI stored on iPhones could also be freely shared but would no longer be protected under either HIPAA or HITECH guidelines.

Big-name Credibility

Knuhtsen’s enthusiasm for patient-centric HIE is due partly to the reputation of those engaged in the SSI movement. Big companies, including IBM and Cisco, are validating peers on the Sovrin Network, working to bring a new standard for digital identity to the internet.

The network was formed years ago by the digital identity company Evernym but didn’t gain traction until it donated the code base to the Linux Foundation’s Hyperledger Project for its development staff and “brand cache” to take to the next level, says Knuhtsen. The nonprofit Sovrin Foundation provides governance and brings in stewards to power its federated blockchain network.

“It’s a formidable solution for solving SSI,” says Knuhtsen. Many of the same high-tech companies on board with the Sovirn Network are also “leading the charge” with the 453-member World Wide Web Consortium (W3C) championing standards for distributed public key infrastructure to decentralize identity authentication, he adds.

Few Contenders

Patient-centric information exchange will be “very valuable to consumers who would like to own, access and have a copy of their personal health data,” Knuhtsen predicts. “Once all this information is under their own purview, either on their phone or through a data agent, they can pass on all the information they want to a medical research or biopharmaceutical company.”

The current crop of HIEs are mostly “directed” exchanges that forward information to physicians who need it, says Knuhtsen. There are also an abundant number of query-based HIEs, such as Epic’s Care Everywhere Network, “but they may not have all the comprehensive longitudinal health information that providers need to properly diagnose the patient.” A few groups other than the Sovrin Network are working toward consumer-mediated HIE, including the CARIN Alliance and Precision Medicine Initiative, but have yet to reach that goal.

AT&T strategically pivoted away from the HIE business around 2014, Knuhtsen says. But the company is now looking into SSI initiatives and how it may be able to participate in what is currently a “low-risk, high-reward” space.