Health IT, Patient Engagement

“Excuse me, I have requested a download” of health records (watch)

"It's perverse to say people are unengaged and then keep them uninformed," said "e-Patient" Dave deBronkart at MedCity ENGAGE.

“E-Patient” Dave eBronkart speaks at MedCity ENGAGE 2016.

 

Back in June, Beth Israel Deaconess Medical Center CIO Dr. John Halamka wrote about a certain perceived shortfall in the Meaningful Use “view/download/transmit” requirement for patient engagement in electronic health records.

In a blog post that MedCity News reposted as a MedCitizens contribution, Halamka said:

Meaningful Use Stage 2 has a requirement that I’ve always considered to be the “cart before the horse” — patients must be able to View/Download/Transmit their data. Viewing is great — we’ve done that at Beth Israel Deaconess Medical Center since 1999 for all patients and all data. Download makes little sense since at the moment there is nothing a patient can do with a download. Of the 2 million patients at Beth Israel Deaconess Medical Center, not one has ever requested a download. Transmit makes even less sense since there is no place to transmit the data to.

That statement did not sit well in the world of empowered patients — particularly with a certain outspoken BIDMC patient named Dave deBronkart. DeBronkart, better known as “E-Patient Dave,” made his feelings known during the MedCity ENGAGE conference in San Diego last week, as this video clip illustrates:

“I have a dispute with the guy who runs IT” at Beth Israel Deaconess, deBronkart said during his closing keynote. He did not name Halamka, whom deBronkart considers a friend.

“Excuse me, I have requested a download,” deBronkart said after drawing attention to the statement that nobody at the Boston hospital had asked for their health records.

“It is a mistake to say nobody is asking for it,” deBronkart continued. He compared that claim to a laughable 1912 pamphlet saying that 90 percent of women didn’t want the right to vote. The 19th Amendment, granting equal voting rights to women, was ratified eight years later after much public demand.

Halamka’s claim on the “transmit” part is equally unsettling to deBronkart, who called it a “chicken-and-egg violation.” There are plenty of places to transmit data to, namely other healthcare providers and to any one of a number of personal health records on the market (and largely unused).

The problem, according to deBronkart, is that BIDMC and other health systems large and small haven’t made many patients aware of such options. “It’s perverse to say people are unengaged and then keep them uninformed,” he said.

For his part, Halamka said he was really talking about flaws in the Meaningful Use rules.

“My comment was that the Meaningful Us” definition of patient/family engagement — the view/download/transmit of summary records — doesn’t really add that much value to the care process,” he explained in an email.

“Instead, BIDMC is moving beyond patient portals and view/download/transmit to the use of Apple CareKit with its internet of things integration/telemedicine/care planning/communication functions,” Halamka explained. “Patients ask for care coordination, not XML downloads (which is what I meant when I said patients haven’t asked for their raw data).”

Halamka noted that he remains “good friends” with deBronkart.

Photo: Ivan Hundric

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