After years and years of failure, the time may finally be right for personal health records and consumer control of medical data to catch on, two Harvard-affiliated informatics researchers said in a New England Journal of Medicine article published online late Wednesday afternoon. That can bring about “patient-controlled health-record infrastructure” to support a “patient-driven health information economy,” according to Dr. Kenneth Mandl, director of Boston Children’s Hospital’s Computational Health Informatics Program (CHIP), and Dr. Isaac Kohane, chair of the Department of Biomedical Informatics at Harvard Medical School.

The difference now, as compared to 1994, when Massachusetts Institute of Technology computer scientist Peter Szolovits called for online patient management of health data, or in 2006, when Google and Microsoft started working on PHRs, is that there now is a critical mass of electronic health records. “There was no way to get the data in,” Kohane said in an interview. “A personally controlled health record was not a business, especially when there was nothing to control.”

Today, according to the authors, 95 percent of hospitals and 54 percent of office-based medical practices now have EHRs certified under the Meaningful Use EHR incentive program.

“Now that we have a system in place, that functionality is a whole lot shorter journey to get to,” Kohane said. “Data is more liquid and demand is growing.”

Plus, the wide availability of smartphones and other consumer technologies is lowering the barrier to entry, Mandl said. These were less prevalent in 2009, when the Health Information Technology for Economic and Clinical Health (HITECH) Act created Meaningful Use, or two years later when MU actually started, he added. “This is not to be underestimated,” Mandl said.

Ah, but, as Kohane and Mandle noted, competitive concerns among providers and vendors have hampered efforts to create data liquidity, and interoperability-related technology such as the Consolidated Clinical Document Architecture and Blue Button have “fallen short,” Mandl and Kohane wrote.

“The requisite technology is no longer mysterious or expensive; it’s a set of commodity-level toolkits for data exposure, transfer, and storage. Successful translation of these technologies into a productive health information economy awaits only cooperation from data producers and purveyors,” they continued.

Policy-makers did not escape criticism, either. “The CCDA, even though it was intended as a lingua franca for the whole Meaningful Use program, was never completed as a standard,” Mandl said. Nor has Blue Button, developed at the Department of Veterans Affairs, been fully realized, he added.

The move from fee-for-service toward risk-based insurance payments is encouraging data sharing, however.

Ironically, Stage 3 of Meaningful Use, which may never go into effect, changes the paradigm as well by calling for application programming interfaces. “The one relatively noncontroversial aspect was the API,” Mandl said.

“But whether or not the Meaningful Use program survives the backlash against it, IT purchasers can demand uniform, useful implementation of an open API,” the NEJM paper noted.

Stage 2, underway since 2014, encouraged the use of patient portals rather than giving consumers full control over their data. Unfortunately, portals have been fragmented, with different logins at each provider, leaving patients to suffer from “hyperportalosis,” the authors said, borrowing a term thrown around sarcastically in Washington policy circles.

“We should be able to do a better job than the 2009 version of Meaningful Use,” Mandl said.

Photo: Flickr user Môsieur J