By Allison Proffitt

September 10, 2015 | Health Information Exchanges seem like such a great idea. Make data accessible to multiple healthcare providers, so it’s always where the patient needs it. Save time in an emergency with full access to health history. Save money by avoiding redundant tests. Keep health records secure and accessible in case of natural disaster.

But in practice, the technological, financial, and practical challenges of implementing such exchanges have derailed many good efforts and stalled others before they even took off.

It’s been a complicated road, and now a documentary explores why.

“No Matter Where” looks at the overwhelming need for health information exchange and electronic health record mobility as well as at the people driving the revolution.

“We are witnessing the end of an era—an era where doctors and nurses had to deliver care without knowing a patient’s medical history, other than what patients might recall, what family members might have noted, or what individual medical records might contain,” says the team behind the film. “[But] this transformation has been slow, at times painful, occasionally dramatic, unfortunately traumatic to some, and not universally supported.”

Kevin Johnson, a professor of Pediatrics and Biomedical Informatics at Vanderbilt University School of Medicine, is the executive producer of the project, and has dedicated much of the past six years to its development. In many ways, the film's history has been as rocky as that of the HIEs it profiles. 

The project started when Johnson and others at Vanderbilt were enlisted to help set up a Health Information Exchange (HIE) in Memphis, Tennessee. They were tasked with the set-up, but also an evaluation of how the project was perceived by patients. That evaluation proved tricky, Johnson said.

Imagine if you were asked to evaluate a sausage factory, Johnson said over lunch—perhaps not the most auspicious start for a mealtime metaphor. But his point is that even sausage-making best practices might be a little off-putting if you don’t know anything about the process.

Some of the patients in Memphis didn’t know anything about how health data is stored or accessed, so asking them to evaluate a data-sharing system raised more questions than answers.

Johnson was frustrated with the lack of feedback and the general level of knowledge. An actor friend suggested he channel that frustration toward a film—a documentary about HIEs and their goals and challenges.

The idea took off.

Johnson wrote much of the film himself. He had has some experience with creative writing, but also relied on his experience as a middle child: “I lied a lot,” he jokes. He had never made a film before, though.

For that expertise, Johnson enlisted Barry Simmons, the founder of StoneCastle Pictures and an award-winning producer of medically-focused documentaries to serve as the director of the film.

One of the first decisions the two made, Johnson says, was to tailor the film to a general audience, not speak to physicians and medical administrators.

He wanted the general public to understand how HIEs are meant to help. The film stays accessible without being condescending thanks to frequent explanatory cartoons and an illustrated, cheeky British commentator. Johnson says that in choosing the character, the team was inspired by Anne Robinson, the British hostess of the television game show Weakest Link.

The film profiles five health information exchanges nationwide: the East Tennessee Information Network; Memphis’ MidSouth eHealth Alliance; and HIEs in Montana, Louisiana, and Oklahoma.

Though HIEs are proving useful under even the most routine care circumstances, early on, Johnson and Simmons decided to focus on disasters in which HIEs played—or could have played—a crucial role.

Ten years ago, in August 2005, when Hurricane Katrina made landfall in southeast Louisiana, there was no HIE for the medical records in New Orleans. Footage from New Orleans in the aftermath of flooding that accompanied Hurricane Katrina showed medical records lining a sidewalk, drying in the sun. Medical personnel who had worked in the Louisiana Superdome talked about the overwhelming challenges of treating patients, many of them elderly or in poor health, who escaped with little to no information about their medical history or their medications.

Moving forward in time, the film contrasts the New Orleans experience with that of Moore Medical Center, which was hit by a tornado in May 2013 in Moore, Oklahoma. The facility was devastated, but was part of an information exchange that enabled the quick sharing of medical records with other area hospitals.

“If we’d been paper-based… the records would have been scattered and useless,” said Dr. Brian Yeaman, Chief Medical Informatics Officer at Norman Regional Health System, of which Moore Medical Center was a part. Instead, every electronic health record survived, and patients’ care was able to continue without, “missing a beat.”

Johnson submitted the film to several film festivals—many of which had no category for a healthcare film, he said. It wasn't accepted, but he remains positive.

"Well over 1,000 people have seen the film," he said. "I think it's going to stand the test of time quite well."

Upcoming screenings are planned in Indiana, Boston, Portland, and Washington with dates and locations announced on Twitter. Screenings are often sponsored by a local nonprofit or health network, and Johnson said the most successful showings have included discussion sessions after the film. He's also working to sell a DVD and to make the film available for streaming via Netflix or iTunes--any route to a larger audience. 

Like the project, most of the exchanges profiled have persevered. Of the five HIEs profiled in “No Matter Where,” four are still operational including a growing network in Louisiana, an expanding network in Oklahoma, and a thriving network in East Tennessee. The HIE that Johnson first worked with in Memphis has struggled after vendor changes, but users have voted to continue building the alliance.

The only HIE that Johnson profiled that is no longer operational is one in Montana, representing a two-year, $1.2 million investment. It’s a testament to the challenges of setting up such a system, but not a harbinger of failure, Johnson said.

HIEs are gaining ground and succeeding, he assures me. “We’ve passed the tipping point.”