HIE's Decade-Long Journey: Bridging Gaps in Health Information Exchange

Editor’s Note: Are you confused by Health Information Exchange (HIE)? Tired of explaining your work to friends and family? A director with a medical background aims to help. Through accessible cinematic visuals, the film introduces audiences to the achievements and challenges in HIE development.

The producer of the film *No Matter Where* is Dr. Kevin Johnson, a professor of biomedical informatics at Vanderbilt University School of Medicine in Nashville, Tennessee. At the annual meeting of the American Medical Informatics Association (AMIA) held in San Francisco, he presented the film to attendees, stating, “I wanted to make this film something my mother could understand.”

This 77-minute film explains the benefits of Hospital Information Exchange (HIE) to the general public in a popular science format, incorporating animations and voiceovers into interview segments to enhance engagement. Additionally, it explores the reasons behind the failure of numerous HIE projects.

Viewers with some familiarity with healthcare IT will recognize many familiar faces in the film, such as Dr. Farzad Mostashari, former National Coordinator for Health IT; Latanya Sweeney, Director of the Data Privacy Lab at Harvard University; and Dr. Mark Frisse, an informatics expert at Vanderbilt University. The film also features some names less familiar to the general public, including leaders who encountered difficulties in their Health Information Exchange (HIE) initiatives in Tennessee and Montana.

“Anywhere” reviews the 10-year journey of health information exchange (HIE) since 2004, when U.S. President George W. Bush called for the establishment of an interoperable electronic health record system—a goal that clearly remains far from realized. The film illustrates how thousands of paper charts and medical records were destroyed during Hurricane Katrina in 2005, whereas in 2013, when deadly tornadoes struck Moore, Oklahoma, electronic records successfully preserved critical medical information despite the destruction of hospitals.

Johnson stated that the filming and production of *Anywhere* took six years and cost $500,000, with nearly half of the funding coming from the Office of the National Coordinator for Health Information Technology (ONC). Other sources included the State of Tennessee, Vanderbilt University, the Tennessee State University Medical Science Center, and Nashville-based American Intelligence Corporation.

Although attendees at the American Medical Informatics Association (AMIA) conference were already well-versed in the issues surrounding hypoxic-ischemic encephalopathy (HIE) discussed in the film, resulting in a relatively muted response, Johnson cited a study indicating that approximately 70% of the general public believes medical records can be accessed instantly via the Internet—a perception that clearly diverges from reality. Consequently, screenings of the film at other venues consistently proved eye-opening for audiences.

At a screening held at the University of Michigan, Ann Arbor, many family members of healthcare and informatics professionals were invited to attend, and they were deeply moved by the film. “In such screenings, the spouses of the relevant professionals are often the most affected,” said Johnson. During the Ann Arbor showing, some patients even left in tears, prompting Johnson to consider changing the background music at the end of the film.

In fact, the film does need to be updated to align with reality. In the film, medical informatics expert Judy Murphy is portrayed as working for the ONC; however, she actually left that position a year ago to join IBM.

Johnson stated that he had negotiated with PBS regarding the broadcast of *Everywhere*, but the public broadcaster requested that the film be trimmed to 53 minutes. Consequently, Johnson needed to secure an underwriter for the film’s television airing. In the meantime, he continued to fulfill DVD orders while scheduling additional tour screenings. Johnson described his tour as a “church tour”—wherever there were patients, there he and his film would be. Bill Hersh, Professor of Medical Informatics at Oregon Health & Science University, confirmed that the university had planned to screen the film in Portland on March 17 of the following year.

The trailer for “Wherever You Are” is as follows.

————————A Decade-Long Journey with HIE————————

HIE originated in the United States and has been widely adopted in Canada (North America), Australia and New Zealand (Oceania), many European countries, as well as Singapore and Japan in Asia. In terms of its origins, the development history of HIE in the United States is more extensive:

▶▶▶The Medicare Modernization Act of 2003 authorized the Agency for Healthcare Research and Quality (AHRQ) and the Centers for Medicare & Medicaid Services (CMS) to award $6 million in grants to five states for electronic prescribing (eRX) pilot projects, aiming to evaluate the efficiency of transitioning from traditional paper-based prescriptions to electronic prescribing.

▶▶▶In 2004, the Office of the National Coordinator for Health Information Technology (ONC) was established, and U.S. President George W. Bush called for the creation of an interoperable electronic health record system.

▶▶▶In the same year, the AHRQ allocated $166 million to improve the quality and safety of medical decision-making and to support patient-centered healthcare delivery. The funding also supported the development of national and regional HIE projects (State and Regional Demonstration [SRD] projects).

▶▶▶AHRQ awards $5 million to six U.S. states: Indiana, Delaware, Rhode Island, Tennessee, Colorado, and Utah.

▶▶▶In addition to strong support for the development of Health Information Exchanges (HIEs), HIEs have also actively evolved in response to market and academic demands, with the most prominent examples being HealthBridge in Cincinnati, Ohio, and the Indiana Health Information Exchange (IHIE).

▶▶▶A New Transformation in the Definition of HIE: Since the establishment of the Office of the National Coordinator for Health Information Technology (ONC) in 2004, the terms “health information exchange” and “Regional Health Information Organization (RHIO)” have often been used interchangeably. In 2008, the National Alliance for Health Information Technology (NAHIT) released five new definitions for specialized health information technology terminology, including those for HIE and RHIO. According to these definitions, HIE refers to the process of exchanging health information, while a RHIO is an organization responsible for facilitating regional health information exchange. In April, the HIE specification document was submitted to the U.S. Department of Health and Human Services and, upon approval, became a U.S. national standard.

▶▶▶On August 20, 2009, the Office of the National Coordinator for Health Information Technology (ONC) issued a Funding Opportunity Announcement (FOA) for the State Health Information Exchange Cooperative Agreement Program, announcing an allocation of $564 million to support the development of Health Information Exchange (HIE). Participating states will enter into partnerships with the ONC and collaborate with it on the planning and implementation of HIE initiatives within their respective states.

▶▶▶On July 28, 2010, a Program Information Notice (PIN) was issued, emphasizing that the program supports the development of Health Information Exchange (HIE) in various forms, particularly market-driven HIE. The PIN subsequently outlined relevant requirements, including engagement with key stakeholders, enhancement of mutual trust, building sustainability, and compliance with national standards.

▶▶▶With continuous expansion of scale and concerted efforts from all parties, HIE has gradually progressed from a series of paper-based requirements for FOAs and proposed agreements to the stage of genuine implementation and rollout.

▶▶▶In early 2010, the Direct Project was launched to support peer-to-peer information exchange among trusted entities. The Direct Project comprises a set of standards and policies that facilitate the secure transmission of information, including clinical summaries, laboratory test results, public health data reports, and admission-discharge-transfer (ADT) messages.

▶▶▶In December 2010, the ONC disbursed a second round of funding to address interoperability challenges currently facing health information exchange (HIE), allocating $16 million to the then ten cooperative agreement partners and rewarding organizations that achieved relevant progress and innovation.

▶▶▶On December 22, 2010, the European Union and the U.S. Department of Health and Human Services signed an agreement to enable the exchange of health information.

▶▶▶In 2010, the number of public HIE platforms in the United States increased from 57 in 2009 to 73, a year-on-year increase of 28%.

▶▶▶In early January 2011, HP signed a contract with the Texas Health and Human Services Commission to establish a statewide health information exchange hub and e-prescribing network, and to implement an electronic health record system for all users.

▶▶▶In May 2011, the Metropolitan Chicago Healthcare Council (MCHC) announced plans to develop MetroChicago as the nation’s largest health information exchange system, leveraging Microsoft’s Amalga enterprise health intelligence platform.

▶▶▶In the first half of 2011, the NORC evaluation team convened HIT/HIE leads from 27 states for 90-minute discussion sessions to conduct a systematic review of all approved strategic implementation plans.

▶▶▶In 2012, Hurricane Sandy swept across the U.S. East Coast, affecting 17 eastern states and causing widespread power outages, water supply disruptions, and communication failures. New York State, the hardest-hit area, leveraged its Health Information Exchange (HIE) to facilitate the inter-organizational sharing of electronic health record (EHR) information, thereby successfully ensuring the continuity of healthcare delivery during the emergency.

▶▶▶The results of the 2013 American Hospital Association (AHA) annual HIT survey showed that more than 60% of U.S. hospitals had established health information exchange (HIE) collaborations with external healthcare institutions, representing a 51% increase compared to 2008.

▶▶▶On June 5, 2014, the Office of the National Coordinator for Health Information Technology (ONC) released a 10-year roadmap for health information interoperability, titled “Connecting Health and Care for the Nation: A 10-Year Vision to Achieve an Interoperable Health IT Infrastructure,” and outlined five key building blocks along with phased objectives for the 3-year, 6-year, and 10-year horizons.

▶▶▶The Obama administration continued to support the executive order issued by President Bush in 2004, which aimed to ensure that most Americans would have electronic health records by 2015.

Text | Chen Xin, Zhou Yanxun
Editor: Mo Renying