Health Information Exchange: A Stepping Stone Toward Continuity of Care and Participatory Medicine
Keywords: Health information exchange, HIE, electronic health records, regional health information organizations, RHIO.
Citation: Finn NB. Health information exchange: a stepping stone toward continuity of care and participatory medicine. J Participat Med. 2011 Oct 18; 3:e47.
Published: October 18, 2011.
Competing Interests: The author has declared that no competing interests exist.
Health care has traditionally lagged behind other industries in implementing speedy, efficient communication of information. For example, in a 2002 book about IBM, the company’s CEO, Louis V. Gerstner, wrote:
Computer and telecommunications technologies give us a reach and flexibility that were beyond imagination just a few years ago. Technology has virtually eliminated distance as an obstacle to doing business. Today an American Express card member from Dallas can buy a plane ticket in Kuala Lumpur and have the purchase authorized in less than 6 seconds by our computer system in Phoenix AZ.
Almost a decade after Gerstner wrote this, a patient’s full health record cannot be accessed at the point of care anywhere in the world. With rare exception, a complete record is not even available to patients or multiple providers within a local region, in spite of the fact that health professionals and patients almost universally agree that full information at the point of care is essential to safe medical practice.
Health information exchange (HIE) is defined as the mobilization of health care information electronically across organizations within a region or community. It provides the capability to electronically move health information between various systems, while maintaining the authenticity and accuracy of the information being exchanged. This sharing of critical and administrative health data electronically enables a care team to make more informed decisions. HIEs are multi-stakeholder organizations that oversee the business and legal issues involved in the exchange of information. The stakeholders are diverse and generally include large doctor groups, solo practices, competing hospitals, and payers. Patients have been visibly absent from the discussions, interactions, and agreements that form and run these HIE organizations. Patient access to their own information from an HIE has also been limited, but that promises to change over time.
A look at the evolution of HIE in the United States reveals that many began as regional health information organizations (RHIOs) that received their initial funding from grants to states. When the funds ran out, many of the RHIOs failed. Nearly one quarter of the RHIOs known to exist in mid-2006 were defunct by early 2007 because they could not work out a sustainable financial model.
Several local RHIOs are slowly being consolidated into statewide networks. State governments are the largest health care payers. They are driven by cost containment incentives, and have the influence needed to fund, develop, implement, and sustain these health information exchange networks and connect them to public health data repositories. Today there are approximately 255 HIEs in the United States, a 9% increase from last year and up significantly from only a few dozen in 2004, according to the eHealth Initiative, another multistakeholder coalition that studies HIEs.
The Taconic Health Information Network and Community (THINC)
THINC is a multistakeholder community-wide collaborative in New York’s Hudson Valley and is one of the success stories for HIE. This seven-county region has a population of over 2 million patients with over 5,000 practicing physicians. THINC is comprised of a broad range of stakeholders from the public and private sectors, including physicians, hospitals, safety net providers, payers, employers, laboratories, public health authorities, quality organizations, state government representatives, community business leaders, consumer advocacy groups, and others in the healthcare industry. The primary purpose of THINC is to advance the use of health information technology through the sponsorship of a secure HIE network that serves over 350,000 individuals and promotes the adoption and use of interoperable electronic health records and the implementation of population health improvement activities, including public health surveillance and reporting, patient-centered medical homes, and other quality improvement initiatives.
The THINC network includes several hospitals, laboratories, and federally qualified health centers, and more than 500 physicians in ambulatory practice. THINC, in partnership with its vendor MedAllies, has sponsored implementation of electronic health records (EHRs) with 750 ambulatory physicians and an internet-based portal to which hospitals and laboratory technicians and physicians in two of the seven counties currently have access. The goal is to encompass all seven counties by the summer of 2012. THINC’s funding model is based on data transfer fees paid by the hospitals and laboratories in the HIE, and a subscription fee paid by physicians. There are other fees assessed to physicians for training and ongoing support of their EHR systems. The collaborative provides training programs to educate doctors about the capabilities of information systems and how they will benefit their practice and their patients. The overall goal is to increase the completeness of data available to physicians at the point of care, incorporate tools for chronic care management, and facilitate process improvement in physician practices.
Patient benefits from THINC include:
- Coordination of patient care so that no matter whether or when patients move between care settings, their information is there with them when they arrive.
- Substantial reduction of medical error and duplicate testing.
- The ability to track and observe patients across health settings which enables quicker public health reporting and case investigation For example, if county health authorities suspect an outbreak of a communicable disease, they can use the public health functionality of the HIE to determine reasons for emergency department visits and decide whether they need to initiate case investigation at the local level.
A patient satisfaction study to determine healthcare consumers’ attitudes towards physician and personal use of health information exchange, based on responses from THINC participants, revealed that out of the 170 individuals who completed the study, 67% of those individuals supported physician information exchange and 58% had interest in using HIE themselves. Those interested in using HIE felt it would improve communication with their physicians. These individuals defined personal HIE as “using the computer to find information about your health or viewing your own electronic medical record.”
Indiana Health Information Exchange (IHIE)
The Indiana Health Information Exchange operates the nation’s largest health information exchange, providing a secure, robust, statewide health information technology network that connects over 80 hospitals, long-term care facilities, rehabilitation centers, community health clinics, and other health care providers in Indiana. This network serves more than 10 million patients and over 18,000 physicians. Formed by the Regenstrief Institute, local hospitals, and other key stakeholders, IHIE brings tools and technologies developed by the researchers at the Regenstrief Institute out to the health care market in Indiana to address the rising cost of health care. Its flagship service is a community-based clinical messaging service that electronically delivers test results (laboratory and radiology) and other reports (transcription, admissions, discharges, and transfers) securely and efficiently to physicians through a secure online portal. IHIE works with hospitals, pharmacies, private laboratories, and other medical care organizations and facilities to deliver this information. IHIE also administers Quality Health First, a clinical quality program for health and chronic disease management. This community service combines medical drug claims data and clinical data to provide physicians with reports, alerts, and reminders to help patients manage chronic diseases.
IHIE partners with the Regenstrief Institute to offer a third service, the Indiana Network for Patient Care (INPC), which is a secure, statewide clinical repository that provides a virtual patient record to physicians. The INPC includes information from encounters covering 90% of the care provided at hospitals in Central Indiana. Local hospitals and other stakeholders provided initial seed money to launch IHIE. It has become self-sustaining by charging user fees to deliver results to participating hospitals, laboratories, and other major data sources. Physicians are not charged for participating in any of IHIE’s three services.
Why e-Patients Should Care About Heath Information Exchange
With extensive specialization in medicine and continual changes in health care insurance coverage, most Americans receive their medical care from a number of different providers. In our current system, patients are encouraged to seek the advice of specialists and obtain second opinions. As a result, patients’ health information becomes scattered among several individual physicians’ databases so that there is no easy way to find a complete record in any one place. HIEs aggregate a patient’s record in a single data file that can be viewed by many primary care physicians, specialists, staff at diverse hospitals, different pharmacists, lab technicians, and therapists who are all a part of the HIE. The advantage to the patient is that there is continuity of care. The number of redundant tests is reduced, along with opportunities for medical error and misinterpretation of data. According to a study sponsored by the Deloitte Center for Health Solutions, consumers are eager for implementation of HIEs that insure the availability of their data in a timely manner and in an accurate format. Their major concerns about HIEs are about privacy and confidentiality of their health information.
One of the barriers to expansion of health information exchange networks across state lines has been privacy regulations. Although patients can travel between states to seek health care or second opinions, privacy regulations vary from state to state so that what is permissible to share in one geographic location is not permitted in another. Patients have the largest stake and the greatest concern when it comes to the confidentiality of their health information. In a world where information will be freely exchanged among multiple sources, patients must have a voice in these decisions.
Right now the adoption of interoperable health IT systems and health information exchange is focused on making health information data more accessible to health care providers, with better clinical care for the patient as a by-product. For example, with nationwide health information exchange, a patient who resides in Seattle, Washington, and is on a business trip can show up critically ill in the emergency room at a hospital in Boston, Massachusetts, and his or her medical record will be available. That should result in better care. There is also the promise of more patient involvement and information access because HIE enables health care providers to identify patients at high risk through predictive analytics and, based upon all their health care interactions, these patients can work with their health care team to collaboratively determine treatment and disease prevention for themselves.
A National Agenda
The ultimate goal of HIE is to interconnect all of the individual RHIOs and statewide networks into one single national chain, the Nationwide Health Information Network. What has put some clout behind nationwide information exchange is a requirement mandated by the American Recovery and Reinvestment Act of 2009, which sets forth a plan for advancing the use of health information exchange as a part of the “meaningful use” incentive program for physicians. The approach that the Federal government takes is to provide grants to the states to promote health information exchange programs on a regional or local level. Beginning in 2009, a group of federal agencies and non-federal entities began exchanging health information based upon an initial set of specifications, services, testing resources, and on a legal and support framework. They are working towards making health information data available to both patients and their care team for the purpose of enhancing clinical decisions. They are also hoping to aggregate the data to improve overall population health. Although this will not happen overnight, it represents a giant step forward toward integrating an individual’s health information and enabling direct patient participation.
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Copyright: © 2011 Nancy B. Finn. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.
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