Confused about health information exchange? Tired of explaining what you do to friends and family? A physician-turned-filmmaker wants to help.
“This film was designed in a way that my mother can get this,” Dr. Kevin Johnson, chair of biomedical informatics at Vanderbilt University School of Medicine in Nashville, Tennessee, and maker of “No Matter Where,” said Monday. He was speaking after a showing of the movie in San Francisco at the American Medical Informatics Association annual symposium.
The 77-minute movie explains the benefits of health information exchange in lay terms, with interviews augmented by animation and narration. It also explores why so many HIE efforts have failed.
Viewers who understand health IT will recognize some familiar faces: former national health IT coordinator Dr. Farzad Mostashari, Harvard Data Privacy Lab Director Latanya Sweeney, Vanderbilt informaticist Dr. Mark Frisse. There are some less-familiar names featured as well, including leaders of troubled HIEs in rural parts of Tennessee and Montana.
The film reviews the HIE journey since President George W. Bush in 2004 called for a national system of interoperable electronic health records within 10 years, a goal that obviously wasn’t attained. It examines how hundreds of thousands of paper records — and medical histories — got washed away in Hurricane Katrina in 2005 and how electronic records survived a deadly tornado in Moore, Oklahoma in 2013, even though the hospital they were based in was destroyed.
“No Matter Where” took six years and $500,000 to make, Johnson said. Nearly half the money came from the Office of the National Coordinator for Health Information Technology, with other funding courtesy of the State of Tennessee, Vanderbilt, the University of Tennessee Health Science Center and Nashville-based Informatics Corp. of America.
While the AMIA crowd knows all the issues, Johnson cited a study indicating that about 70 percent of the general public believes that all of their medical records are instantly accessible over the Internet, a perception that clearly does not square with reality. So the film has been an eye-opener at other screenings.
A Deep-dive Into Specialty Pharma
A specialty drug is a class of prescription medications used to treat complex, chronic or rare medical conditions. Although this classification was originally intended to define the treatment of rare, also termed “orphan” diseases, affecting fewer than 200,000 people in the US, more recently, specialty drugs have emerged as the cornerstone of treatment for chronic and complex diseases such as cancer, autoimmune conditions, diabetes, hepatitis C, and HIV/AIDS.
A showing hosted by the University of Michigan in Ann Arbor included family members of medical and informatics staff, and many were emotional by the end. “At other screenings, the spouses have been the ones affected,” Johnson said.
Some patients in the Ann Arbor audience left crying, prompting Johnson to change the music at the end of the film, he said.
Indeed, it is a work in progress that’s possibly in need of updating. The film identified longtime nurse informaticist Judy Murphy as being with ONC, but she left government service for a job at IBM a year ago.
Johnson said he has had talks with PBS about showing “No Matter Where,” but the public broadcaster needs the film cut down to 53 minutes and Johnson needs to find an underwriter to support an airing. In the meantime, he is taking DVD orders and setting up more screenings on what Johnson called a “church tour” — going where patients are.
Oregon Health & Science University has scheduled a showing in Portland for March 17, according to medical informatics chair Dr. Bill Hersh.
Watch a “No Matter Where” trailer below.
Photo: Out of the Box Productions
