This is the first of two columns that I’ll be writing about Health Information Exchange (HIE). It’s a big topic and it will take two columns to get through it.

This first column covers:

  • What is HIE?
  • Why is HIE important for health centers?
  • What are the advantages and disadvantages of HIE?
  • Who is using HIE and how successful have they been?
  • What are some lessons HIE users have learned that may be helpful to you?

The second column will focus on:

  • How is HIE accomplished?
  • What information is actually exchanged?
  • How is the information used?
  • What are the technical and non-technical issues that must be addressed?
  • How does HIE relate to what you’re doing this year?

Taken as a whole, these two columns will be a broad, although necessarily incomplete, summary of what HIEs mean to health centers.

What is health information exchange?
HIE is one of those things that is relatively easy to define, but hard to bring about. The Office of the National Coordinator (ONC), which is the body that provides counsel to the Secretary of HHS for the development and nationwide implementation of an interoperable health information technology, has defined HIE as “the electronic movement of health-related information among organizations according to nationally recognized standards” (Report of the National Coordinator for Health Information Technology on Defining Key Health Information Technology Terms, 4/28/2008). Sometimes the term HIE is used as part of the name of a Regional Health Information Organization, or RHIO, defined in the same report as, “a health information organization that brings together health care stakeholders within a defined geographic area and governs health information exchange among them for the purpose of improving health care in that community.” Here I’ll use “HIE” to mean the process of sharing information and “RHIO” to mean the organization that facilitates the sharing.

RHIOs may include large public or private hospitals; community health centers and other ambulatory facilities; non-hospital residential facilities, including rehabilitation centers and long-term care facilities; and, finally, other types of organizations, such as visiting nurse associations and health care foundations. RHIOs are among the building blocks of the Nationwide Health Information Network (NHIN), a secure interoperable national HIT network funded by the Office of the National Coordinator for Health Information Technology. When implemented, the NHIN, which has been described as a “network of networks,” will tie together providers, consumers and others engaged in delivering and supporting the provision of health care.

The purpose of a RHIO is to share information among its members, while its motivation is to improve the care and outcomes for patients and to increase the business effectiveness of the organizations that belong to it. The RHIO members agree to share patient information across a secure exchange, and an individual patient’s records, including demographic and clinical information, are available to every participating provider, irrespective of where the care was delivered. Perhaps the first time this was tried on a regional basis was the Santa Barbara County Care Data Exchange. Funded initially in 1999 by the California Healthcare Foundation (CHCF), this RHIO was influential in both policy and technology development. Unfortunately, it was shut down at the beginning of 2007 after many years of technical and organizational prototyping. (A good deal has been written about SBCCDE; see SBCCDE: Lessons Learned, Robert H. and Bradley S. Miller, published by CHCF.) A more successful early example is the Indiana HIE. Founded in February 2004, it currently has over 30 members including hospitals and health center controlled networks, and has developed (in conjunction with the Regenstrief Institute) a successful technology applications suite to support the requirements of HIE.

The eHealth Initiative (eHI) has surveyed the HIE landscape each year for the past several years. Their 2008 survey found 117 exchanges active in the U.S. Of these, 39 were in the early stages, 36 were in implementation and 42 were operational – that is, exchanging some data. Twenty-eight percent of the organizations responding were federally qualified health centers or look-a-like clinics (33 health centers). Here are two examples of RHIOs that include health center participants:

The first is the Bronx RHIO (Bronx, NY). It consists of 19 organizations, including seven hospitals (two of which are very large: Jacobi Medical Center and Montefiore Medical Center); three health centers or health center networks (Morris Heights Health Center, The Institute for Family Health and the Bronx Community Health Network, Inc.); three residential or rehabilitation facilities; several foundations or other public organizations (the VA, for instance) and the Visiting Nurse Regional Health Care System. All told, this RHIO provides over 600,000 Emergency Department visits and 4.5 million ambulatory care visits a year.

The second is the Alliance for Rural Community Health (ARCH, Lake and Mendocino Counties in California). This exchange consists of six health centers, a cancer treatment center and the only hospital in the area. It has 11 sites and provides services for about 37,000 residents (43 percent of the counties’ populations).

Findings of the most recent eHI survey reported in September 2008 included the following

  • Over 90 percent of the organizations cited improvement in quality of care and improvement of patient safety as their primary reasons for participating in an HIE
  • Seventy percent also cited lowering costs as an important motivation
  • Positive changes were reported as a result of participation, including better access to test results, improved patient compliance with chronic care and prevention guidelines, better care outcomes and increased recognition of disease outbreaks
  • Over 70 percent of participants reported decreased costs resulting from reduced staff time, decreased support staff, fewer redundant tests and decreased cost of care for patients with chronic conditions

Have outcomes been improved, especially for health centers, at the Bronx RHIO and ARCH? The Bronx RHIO went live in June 2008 with data mainly from its hospitals, so we’ll have to wait to see what happens there. ARCH has been active for 10 years, and reports increased efficiency in part a result of economies of scale, and in part resulting from its use of EHR and electronic patient screening software. This has allowed it to identify and add new services, including digital mammography and digital retinopathy, to address emerging patient needs.

Considerations and Issues
This is all very exciting, but there are some disadvantages and issues. These issues fall into three categories: technological, fiscal and organizational. The technical complexity of achieving information sharing is a substantial set of problems that I’ll address in my next column.

The primary fiscal issue is the lack of a viable business model for information exchange. Historically funding has been available for start-up process and technology acquisition, but rarely for maintenance. A recent study of RHIOS by Julia Adler-Millstein, David W. Bates and Ashish K. Jha (Health Affairs. 28(2). p483) found that 41 percent of operational RHIOs reported that revenue from participating entities was sufficient to cover costs, and of the remainder, only 28 percent expected that revenue over time would adequately cover costs. Initial funding has been helpful in facilitating the participation of health centers in exchanges, but it does not address the issues of staying in an exchange longer term. Thus, support for ongoing operating costs and financial sustainability over time are important considerations.

Another issue is the amount of time it takes for health information exchange to become viable. HEAL NY (Healthcare Efficiency and Affordability Law for New Yorkers is a multi-phase New York State initiative to invest approximately $250 million in interoperable HIT. A recent study of HEAL grantees (L.M. Kern et al. 2009. HEAL NY: Promoting Interoperable Health Information in New York State. Health Affairs. 28(2). p493.) found that the adoption of both core HIT and HIE occurs over a long horizon. While most grantees were able to begin the HIE process over a two-year period, achieving productive information exchange generally took much longer. Achieving meaningful results in operations or clinical outcomes would require even more time.

Organizational issues are also critical and several are unique to CHCs. Most of the existing RHIOs are structured around a few relatively large organizations, mainly the hospitals that serve the area. The technology and policies adopted by the exchange are generally focused on the needs of the larger constituents. Health centers have different technology and policy needs than other providers, and are often afterthoughts in the development of the RHIO. Further, health centers may not have the time or the staff to dedicate to the planning and decision making at the governance level, so those organizations that do are better served. This is a key trade-off for health center participation in an exchange: will the health center (or health centers, if multiple ones are involved) be able to advocate for its own needs with respect to information exchange? In the Alliance for Rural Community Healthcare in California, the majority of members are health centers, so this is less of an issue for the health centers as a group. The Bronx RHIO, on the other hand, includes three health centers among 19 members, and while larger than many RHIOs, it is more typical in terms of a structure weighted toward non-CHC providers.

There do appear to be real advantages to participating in an HIE, but how do health centers ensure their needs are met organizationally, technically and from a policy standpoint? Health centers need to bring their strengths to the HIE party. We know that HIEs are emphasizing two major uses of health care information: information for improving direct care of patients and information for addressing health care at a population level. Health centers excel at the delivery of direct primary care and the management of health services at the community level so bringing this expertise to the organization and operations of a RHIO will allow health centers to wield influence beyond their proportional representation. The real knowledge of what works and what doesn’t, especially for socially and economically vulnerable patients, will be invaluable to exchanges as they begin to provide care for these populations. Health centers can help make real the goal of providing the information necessary to the treatment of all people, regardless of where their point of care is.

The next column in this series will focus on how HIEs are implemented and deployed, and what technical advantages (and disadvantages) there may be for health centers.