HIE Documentary Shocks, Angers Patients

The filmmaker's objective was not to start a patient-led movement for better health information exchanges. But the way audiences react when they learn their EHRs are largely unable to be shared may spur them into action.

One may pound podiums in Congress or write convincingly about the sorry state of interoperability among healthcare IT systems, but Kevin Johnson, MD, made a movie, and judging by audience reaction at early screenings, he may be awakening the public at large about this mess.

Patients who believe that their electronic health records can already follow them wherever they go in the U.S. have been leaving the screenings "shocked and angry," Johnson told a post-screening audience at last week's annual symposium of the American Medical Informatics Association in San Francisco.

In fact, Johnson says, 70% of U.S. patients believe medical records follow them, when in fact the sad truth today is that only 25% of the U.S. is covered by health information exchanges.

To change this, Johnson produced No Matter Where, a documentary supported by funding from the Office of the National Coordinator, from the state of Tennessee, and from other sources.

A centerpiece of the film is the contrast between two very different disasters—Hurricane Katrina in New Orleans in 2005, where paper records on 800,000 patients were destroyed by storm and flood—and the tornado that hit Moore Medical Center in Oklahoma in 2013, where the local HIE preserved medical records and followed Moore patients to surrounding area hospitals without skipping a beat.

No Matter Where and Hurricane Katrina from kevin Johnson on Vimeo.

A More Impactful Way to Communicate
So who is Kevin Johnson? "I'm a pediatrician," he says. "I've been doing clinical informatics research since basically 1989." After stints at Johns Hopkins and Stanford, he ended up at Vanderbilt, where he is currently assistant vice chancellor for health IT, Cornelius Vanderbilt professor and chair of biomedical informatics, and professor of pediatrics.

Eventually, he realized that research papers end up having too limited an impact. So, inspired by TED talks, he turned to the idea of "vision videos" to communicate new ideas. This led him to focus on the nation's effort to make healthcare data interoperable, or at least to have it follow patients—the very essence of health information exchanges.

Eventually, the film focuses on a woman who lost her husband too soon to cancer as a result of uncoordinated care between his primary care physician and his oncologist. Leigh Sterling then leveraged her executive experience outside of healthcare to become an HIE champion as executive director of the East Tennessee Health Information Network (etHIN) in Knoxville.

But Sterling's effort to sustain and grow etHIN exposed a major challenge made clear in the film. We watch HIEs struggle to be born and grow, only to succumb to the well-documented business and technical challenges of HIEs. Given Sterling's strong motivation for joining the cause, it's heart-wrenching.

Johnson's biggest challenge was conveying the information about HIEs "in a way that my mother actually understands the issues," he says. "That was the metric." A narrator helps, as do vivid animations, graphics, and humor, making what can be an impenetrable subject as accessible as possible on film.

The objective of making the film was not to start a national patient-led movement for HIEs, although Johnson hopes that this could be one outcome of the many screenings he is in the midst of holding around the country.

"It's almost like we don't expect the technology that's in all other aspects of our lives to be there," in healthcare, says Judy Murphy, who at the time of filming in 2014 was chief nursing officer at the ONC. (She has since moved on to become CNO of IBM Healthcare). "I think when you sit there and you do online banking, and you book your flights, and you check into your flights, and not only on the Internet, but on mobile devices now, people are starting to realize, because of what goes on in other aspects of their lives, that they could have this in healthcare."

"We realized, the places where we'll find HIE happening, it's kind of like the Sistine Chapel floor. You realize you're walking on it, but you pay no attention to it," Johnson says. Yet, the movie also points out HIE technology's limitations. In one segment, physicians in Montana struggle to learn how to use the nascent HIE alongside their electronic health records. Six months later, Montana's HIE was dead.

On the other hand, a line in the film prompted some immediate action at the highest levels of government. In revisiting New Orleans ten years after Katrina, the filmmakers discovered that two thirds of the state of Louisiana did not belong to the state's HIE.

"It's better now," Johnson says. ONC National Coordinator Karen DeSalvo, MD, former health commissioner of New Orleans, "was quick to clarify this point with me when we put that on film," he says. "It's better now. This is a film about an ongoing process."

At one point, the film touches on the pressure being put upon small practices not only to computerize, but to belong to HIEs even if they do not see the value if the HIE doesn't contain sufficient information on patients.

A Few Omissions
For that matter, there is no mention of the EHR vendor-driven Health Information Service Provider model which has really taken the wind out of HIE sails around the country. While the country now struggles to connect these HISPs to each other, it's clear that in the effort to simplify a complex story, Johnson has failed to account for a huge reason that HIEs are failing: EHR vendors continue to promise to take care of everything for physicians, even as those physicians are increasingly winding up being acquired by large healthcare systems.

The film also lacks many voices of hospital and healthcare system executives, some of whom I am guessing gave the kind of long-winded answers to questions which does not make good cinema. Johnson confirms that much of what they had to say wound up on the cutting room floor.

Still, it's riveting to see the stories of Sterling and others on the big screen, with an appropriate focus on what patients want and need, not just physicians. It remains to be seen if this grass-roots effort, abetted by ONC funding and a passionate filmmaker, can shock and outrage the public sufficiently to make a difference.