Health Information Exchange in Post-Acute and Long-Term Care Case Study Findings: Final Report

U.S. Department of Health and Human Services

Health Information Exchange in Post-Acute and Long-Term Care Case Study Findings: Final Report

Executive Summary

Rachael E. Bennett, MA, Mark Tuttle, FACMI, Karis May, Jennie Harvell, Med, and Eric A. Coleman, MD, MPH

University of Colorado
Health Sciences Center

September 18, 2007

This report was prepared under contract #HHS-100-03-0028 between U.S. Department of Health and Human Services (HHS), Office of Disability, Aging and Long-Term Care Policy (DALTCP) and the University of Colorado. For additional information about this subject, you can visit the DALTCP home page at http://aspe.hhs.gov/_/office_specific/daltcp.cfm or contact the ASPE Project Officer, Jennie Harvell, at HHS/ASPE/DALTCP, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, S.W., Washington, D.C. 20201. Her e-mail address is: Jennie.Harvell@hhs.gov.

The opinions and views expressed in this report are those of the authors. They do not necessarily reflect the views of the Department of Health and Human Services, the contractor or any other funding organization.

STUDY OBJECTIVES

The study, entitled "Health Information Exchange in Post-Acute and Long-Term Care," was sponsored by the Office of the Assistant Secretary for Planning and Evaluation (ASPE), U.S. Department of Health and Human Services (HHS), and conducted from September 30, 2005 through October 15, 2007. The purpose of the study was fourfold: (1) describe the current status of the use of health information technology (HIT) in existing state-of-the-art health delivery systems (HDSs) and how health information is or is not exchanged with "unaffiliated"¹ post-acute care (PAC) and long-term care (LTC) providers and other components of the health care delivery continuum (e.g., physician offices, laboratories, pharmacies, and hospitals) that use HIT; (2) identify the factors that support or deter the timely exchange of needed health information to and from unaffiliated PAC and LTC providers and other components of the health care delivery continuum that use HIT; (3) identify ways in which policy makers can encourage information exchange by HDSs that use HIT with unaffiliated PAC/LTC providers; and (4) summarize and organize information learned and describe the next steps that could be pursued to extend HIT into PAC/LTC.

The study was divided into three phases. The first phase included a review the literature. The second phase involved speaking with stakeholders and national experts in the area of health information exchange (HIE). The third phase built upon these first two phases by conducting four site visits with exemplar health systems to obtain more detailed information to address the stated study objectives. Based on national reputation and willingness to host a site visit, four "hub sites" were selected. The study team then identified both affiliated and unaffiliated providers (i.e., "spoke sites") in each of these geographic areas that received patient referrals from the hub sites. As the four hub sites were not selected at random, the findings and recommendations of this study are limited and may not be representative of all PAC and LTC settings in the United States.

WHY THIS RESEARCH IS IMPORTANT

There is increasing recognition in both the public and private sectors that significant improvements in health care quality, continuity of care, and efficiency of care may be realized through implementation of HIT. The ability to share health data between and among health care providers is critical to providing high-quality, cost-effective, informed health care. The ability of health providers to act on timely information improves workflow efficiencies and may save lives. A paper medical record does not allow for such efficiencies to be fully realized; yet at this time, the vast majority of PAC and LTC providers (and other health care settings, also) still use a paper medical record for the authoritative record.

In acknowledgement of the increasing importance of HIT implementation, a number of initiatives have followed the April 2004 Presidential Executive Order 13335. This Executive Order recognizes the need for the development and nationwide implementation of an interoperable HIT infrastructure and established the position of the National Coordinator for Health Information Technology (NCHIT) in the HHS to provide leadership for this effort. Shortly thereafter, the Office of the National Coordinator for HIT released a report, "The Decade of Health Information Technology: Delivering Consumer-Centric and Information-Rich Health Care" (Office for the NCHIT, 2004) that outlines a framework for realizing the goal that most Americans have an interoperable electronic health record (EHR) by 2014.

A previous study also conducted by the University of Colorado at Denver and Health Sciences Center (UCDHSC), entitled "Electronic Health Records in Post-Acute and Long-Term Care" found that health information shared across health settings (e.g., acute care hospitals, physician offices, nursing homes [NHs], home health agencies [HHAs], laboratories, and pharmacies) was inadequate to support high-quality patient care. When information was shared, it often was shared only with "affiliated"² providers. The authors sought to understand if this trend had shifted in the three years since that study had concluded. This current study built upon those findings and posed additional questions: How is information shared across and between health care provider settings? Is information shared differently when shared with affiliated versus unaffiliated settings? Does involvement in a health information exchange network (HIEN) (e.g., a regional health information organization [RHIO]) make a difference in the types of or amount of data shared across health settings?

OBSERVATIONS

Four leading edge sites were chosen as "hub sites" for visitation based on the fact that each provider site: (a) was using a relatively robust electronic health information system; and (b) collaborated with a number of affiliated and unaffiliated PAC and/or LTC settings that treat their patients. Three of the four settings also were involved in some type of RHIO/HIEN.

The four hub sites were: Erickson Retirement Communities (Catonsville, Maryland), Montefiore Medical Center (Bronx, New York), Intermountain Health Care (IHC), specifically LDS Hospital (Salt Lake City, Utah), and the Regenstrief Institute/Indiana Health Information Exchange (IHIE) (Indianapolis, Indiana). Each hub site has earned the reputation for being a leader in promoting HIE, has strong ties to the community, strong local leadership, and an organizational and cultural commitment to enhancing quality of care and increasing efficiencies.

Each site visit was comprised of multiple components. On the first day, the site visit team visited a hub HDS (one was a continuous care retirement community (CCRC), two were acute care hospitals, and one was an academic health center). The second and third days of the site visits were spent visiting three or more LTC or PAC settings³ that receive referrals from the hub site. When possible the site visit team visited both affiliated (i.e., owned) and unaffiliated settings. In some cases, names of PAC/LTC settings were obtained from the hub site contact and in other cases the project team independently approached the PAC/LTC settings and requested their participation in the study.

Although there were geographic, socioeconomic, and organizational/structural differences at the four sites, a number of common themes emerged, which are highlighted below.

1. Limited Health Information Technology Adoption in PAC/LTC Settings

In general, the site visits revealed limited adoption of HIT in PAC and LTC settings. This finding is consistent with two studies on HIT adoption in PAC/LTC settings. A 2005 study by Kaushal and colleagues (Kaushal et al., 2005a; Kaushal et al., 2005b; Poon et al., 2006) estimated EHR adoption in 2005 for NHs to be 1% and less than 1% for HHAs. The authors projected that HIT adoption in five years will not increase much for either health sector (14% for NHs, and 1% for HHAs). The other study included a survey that was conducted by the American Health Care Association (AHCA) and the National Center for Assisted Living. Two of the key findings were: (1) paper continues to be the primary communication mechanism in NHs and assisted living facilities (ALFs); and (2) while respondents to this survey express that they are beginning to adopt more HIT, in three years, it is projected that these two settings will still be in the early stages of transitioning to HIT (American Health Care Association, 2006).

Because the project objectives included looking at state-of-the-art delivery systems, the majority of PAC/LTC sites visited were early adopters of HIT in some capacity. However, with a few exceptions, HIT use was generally limited, was not standards-based, and typically did not include data exchange capabilities. The visited PAC/LTC providers used information technology applications that met rudimentary regulatory requirements and billing needs, and were observed to be using HIT applications for some intra-facility functions. However, the use of HIT by PAC/LTC for HIE with other organizations (e.g., hospitals) was observed rarely. In some cases, there was no EHR used, nor were there future plans to implement HIT.

2. Poised for Interoperability

The Presidential Executive Order of August 2006 defines interoperability as "the ability to communicate and exchange data accurately, effectively, securely, and consistently with different information technology systems, software applications, and networks in various settings, and exchange data such that clinical or operational purpose and meaning of the data are preserved and unaltered" (Federal Register, 2006). At one hospital visited, a representative declared that health care enterprises in his region were "poised for interoperability." The same observation could be made at another hospital visited, and represented an important shift from only a few years earlier when interoperability was not of paramount concern. Although no site presented a schedule for achieving complete interoperability across all settings, each hospital had plans in place for some degree of data exchange outside of its enterprise. Moreover, each expressed some intent to include nearby LTC sites in those plans. The study team found that one of the biggest drivers for health data exchange was a desire to support "anytime/anywhere" access by physicians and other providers who practiced in multiple care settings. Care providers who had such access then wanted to be able to include information from the "remote" or referring system into the "local" or receiving system. Anytime/anywhere access often was supported by dial up connections, and, increasingly, by web interfaces. However, "electronic population" of the local or host system with information from a remote system was rare. Not surprisingly, once providers began having remote access in one care setting, they also wanted access in other care settings. However, staff at the various sites expressed various formidable challenges when they attempted to populate local or host electronic medical records (EMRs) with remote information.

The phrase "data exchange" was typically interpreted by the sites to mean the display of patient information on a local computer that originated from a computer at a remote, unaffiliated care site. Although it is implied that this involves a two-way data exchange method, more often than not, it was simply a one-way transaction.

Two clinical scenarios stood out for their ability to illustrate the demand for HIE and the inherent challenges: the transfer of patients from hospital to PAC or LTC settings, and the transfer of NH residents to the emergency department (ED). Care providers in NHs that receive patients from hospitals, and in EDs that receive patients from NHs want to know certain details about the patient's current status and medical history and they are willing to take the time to read this information on a computer screen if the information is current and trusted. The notion that, for example, the receiving provider's EHR would be able to represent information about the patient in a way that could feed into a decision support feature and influence the care plan was described as a goal by some sites, but not one that was expected to be achieved any time soon.

The three phases of this study helped inform a proposed framework for HIE that is illustrated in Table ES-1. One can think of these different kinds of data exchange arranged on a continuum or spectrum; at one end of the spectrum the phrase "data exchange" implies that computers can act as the informational equivalent of fax machines only; at the other end of the continuum, "data exchange" implies that information received by a computer can be used in the same way as information entered locally. An example of the latter would be an ability to import a medication list that had been reconciled in the hospital and represented in its EMR into an outpatient EMR that facilitated the local computer to analyze the synthesized list for drug-to-drug and drug-to-disease interactions.⁴

TABLE ES-1: Levels of Health Information Exchange

Table ES-2 expands upon the Table ES-1 framework by proposing specific features for each level to suggest a progression from less to more sophistication of HIE. This table was constructed based on the literature review as well as the study team’s observations concerning HIE and use of EHRs across the sites selected for the study. Although none of the settings observed have reached Level 4 (i.e., completely interoperable EHR systems, using standards-based applications to share information with affiliated and non-affiliated providers), it is included as the purported “future goal.”

3. Data Exchange among Health Settings, Particularly Post-Acute and Long-Term Care

At every NH and HHA visited, the potential benefit from engaging in activities with external parties to support and increase HIE was observed. At Erickson, the local and national information technology staff are prepared to subsidize the implementation of HIE standards if such standards are available in the near future. In each of the other three visited locations, PAC and LTC enterprises are in a position to benefit from HIE efforts originating outside of their organizations. Although PAC and LTC sites are not leading HIE efforts and are not directly involved as collaborators; they will benefit nonetheless. As all PAC and LTC sites had some Internet connectivity and some local information technology systems (even if only to meet administrative data reporting requirements), the barriers to sending and receiving electronic patient information are lower than once observed. However, because the perceived and actual barriers to the simultaneous re-use of patient information remain high, driven by factors that include implementation and maintenance costs, mistrust of the data, a fear of litigation, and Health Insurance Portability and Accountability Act (HIPAA) and other privacy concerns, such interoperation is not yet in sight for any enterprise visited. Nevertheless, once human-readable electronic exchange is in place, the incentives for the automatic population of local systems from remote systems with computer-readable electronic health information will become more clear and measurable. For example, it will be easy to assess the amount of time, and therefore the cost, required to manually re-enter information in a local system that exists in electronic form elsewhere. In this sense, the fact that hospital is "poised for interoperability" will help expedite the incremental deployment of HIE at collaborating PAC and LTC sites.

a. Workflow. The four site visits reinforced the central role that workflow issues play in HIE. Information technology is a cross-cutting issue, an observation that permeated the site visit discussions at many levels. In general, relatively highly-paid professionals in hospitals, PAC, and LTC settings are expending a significant proportion of their time on clerical tasks rather than attending to patients' clinical needs. EHRs did not necessarily provide solutions to this inefficiency. Because of the lack of interoperable EHRs, it was common for sites to report that nurses and physicians read from a computer screen or print out a patient's health data from one electronic health application only to manually enter the information into another electronic health application (such as an EHR). Respondents described manually re-entering laboratory results received electronically into their own EHR system, because the two electronic systems did not have the capabilities of exchanging data. In most cases, the clinicians were not consciously aware of the amount of effort that was being expended. Rather, they had long accepted these tasks as inevitable.

Further probing revealed that manual data re-entry from one system or medium to another may add value in terms of improving quality and safety. For example, the process of printing the medication list from one electronic source and then manually entering into an EMR provided an opportunity for greater scrutiny than what would have been made had the medications been reviewed on a single computer screen. During these discussions, clinicians acknowledged that this manual re-entry activity was not simply a clerical process but rather something that provided an opportunity to cognitively assess whether the medications were in fact appropriate, whether any additional diagnostic testing was required, and whether the patient might be at risk for an adverse drug reaction. Alternatively, this process has the potential to introduce new errors due to transcribing errors (Brody, 2007). Thus, it remains to be determined how these vital tasks will be accomplished once more advanced (e.g., interoperable, standards-based) electronic solutions are forthcoming.

b. Majority of data sharing to and from PAC/LTC is done manually. Independent of the degree of EHR capability in place at the hub sites, the exchange of data between these hubs and affiliated and unaffiliated PAC/LTC settings is largely conducted manually (phone, fax, paper records that are mailed or accompanies the patient at the time of transfer). This information either is filed in a paper record and/or transcribed into the PAC/LTC setting's EHR. Phone, fax, and paper records continue to be used for patient referrals, discharge, and transfer documentation. Although some implementation efforts were underway, the study team did not witness any electronic transmission of data from PAC/LTC settings directly into the hospital's EHR systems.

c. Importance of personal relationships in referrals. Although HIT can and will expedite referrals from one setting to the next; it was observed that today, personal relationships superseded any technological advancement in place. In other words, the "human element" is well engrained into the process of data exchange. One observation that crystallized this point was hearing that despite implementation and acceptance of an electronic mechanism to facilitate post-hospital patient placement in skilled nursing facilities (SNFs), discharge planners often finalized these arrangements outside of this mechanism telephonically with admission coordinators with whom they had a personal relationship. They trusted these people more willingly than an "anonymous" source of data.

d. Lack of standards used. Two primary observations regarding adoption of standards-based HIT solutions in PAC/LTC were observed. Firstly, among those PAC/LTC providers that had purchased and implemented an EHR system, the use of standards as a vetting criterion for vendor selection was not considered. Respondents clarified that standards development and adoption are still in the early stages, which is why most of the systems used by the visited PAC/LTC settings did not use standardized terminologies, messaging standards, or documents for the electronic recording and exchange of health information. They would like to see greater consensus on some of the standards work before they invest the resources necessary to adopt/convert their systems. The other observation is that many PAC/LTC settings visited were unaware of the extent of activity in the standards development community, and therefore did not see the potential value of having a standards-based EHR system to facilitate HIE across health settings.

In other cases, the lack of standards was not synonymous with a lack of sophistication in EHR adoption. In fact, national health care leaders including the Regenstrief Institute, IHC, and the Visiting Nurse Service (VNS) of New York were early adoptors of HIT applications that support clinical care, and as a result they developed their own "homegrown" systems prior to the emphasis on using national standards. When asked if they were planning on adopting balloted, Consolidated Health Informatics (CHI)-endorsed standards, representatives from these early adopters indicated that it was financially prohibitive to reconfigure their systems.

e. Lack of financial incentives for HIE. The site visits did not reveal any real or perceived financial incentives for adopting HIT that supports HIE with outside entities. The initial outlays for hardware and software remain prohibitive, training costs can be quite high, particularly considering the historically high staff turnover in PAC/LTC, and ongoing maintenance costs may be difficult to justify when the short-term return on investment is unclear. Furthermore, the benefits of HIE do not necessarily accrue to the institution that makes the investment in hardware/software, including the time to input and maintain the information. These costs and uncertainties regarding the return on investment will likely be particularly problematic for small, independent PAC/LTC settings. The business case for the referring organization that would need to make the HIT investment remains underdeveloped.

RECOMMENDED NEXT STEPS

A significant barrier to widespread electronic exchange of health information with PAC/LTC settings is that the majority of PAC/LTC providers and those health care organizations with which health information must be exchanged, have yet to implement EHR/HIT systems with the capacity to support interoperable HIE. It is not that leaders in those settings do not see the value in obtaining timely, accurate health data from a referring site (or providing it to other settings at discharge). It is possible that the functionality seems so far out of reach at this point, due to the lack of low-cost, reliable, well-supported hardware and software, and the lack of data available on the return on investment of adopting HIT, particularly in the PAC/LTC health sector. Thus, demonstration, dissemination, and education regarding the benefits of adopting an interoperable EHR system relative to the associated costs of not adopting these systems are imperative if providers and vendors are going to invest more heavily in EHRs for PAC and LTC.

The study team recommends that a thorough, targeted national survey of HIT adoption, use, and barriers to adoption in PAC/LTC should be conducted. There have been small-scale studies looking within a specific geographic region or market area (Continuing Care Leadership Coalition, 2006; Hudak & Sharkey, 2007), and the 2007 National Home and Hospice Care Survey includes, for the first time, questions on whether the responding HHA has an EMR, and if so, whether the HHA uses certain EMR functions or whether these functions are either not used or not available (personal communication with Jennie Harvell, ASPE Project Officer). Experts have convened and given their best impressions and projections for HIT readiness in all types of health sectors, including PAC and LTC (Kaushal et al., 2005a; Poon et al., 2006). However, to date, there has not been a scientifically-based, comprehensive survey on the specific types of HIT applications that are currently in use, or that are being considered for future implementation in NHs.

Continued development and adoption of standards-based work needs to take place. Recent developments are promising. For example, an important step forward is the recent letter from the Secretary of HHS to the National Committee on Vital and Health Statistics (NCVHS) that the CHI recommendations for HIT standards for the Functioning and Disability domains will be adopted for use in new federal health information systems and, to the extent possible, as existing health information systems are modified. Likewise, approval by Health Level Seven (HL7) and the Health Information Technology Standards Panel (HITSP) of the Continuity of Care Document (CCD) standard, a harmonized summary record standard is an important needed activity to facilitate interoperable data exchange across settings. These standards-based activities need to be built upon and expanded.

Related to the above point, PAC and LTC provider participation in standards development and encouragement of HIT adoption is paramount. The LTC provider and vendor communities were instrumental in the recent decision by the Certification Committee for Healthcare Information Technology (CCHIT) to include the certification of NH EHRs in its expanded scope of work. CCHIT certification can be a valuable asset for NH providers to reduce their risk when making costly HIT investments. Continued participation in standards development work is necessary to keep the LTC and PAC communities involved in the future directions that will evolve.

PAC and LTC settings' involvement in HIENs/RHIOs should be increased. Given the Federal Government's interest in moving the Nationwide Health Information Network (NHIN) to the next phase, it is clear that HIENs will be key players in that process. Education on the role that HIENs are playing in communities and encouragement of all setting types to get involved is important to ensuring their "voice" is heard in the design and development of HIE strategies.

NOTES

1. Unaffiliated, for the purposes of this study was defined as not being owned by the hub site.

2. Affiliated, for the purposes of this study, refers to settings that are owned by the hub site.

3. In the case of Erickson Retirement Communities, the protocol was turned on its head. That is, because the Erickson campus included a skilled nursing facility and a home health agency, the “referral” sites were places that served the needs of Erickson residents that could not be met on the campus (i.e., acute care and hospice services). Johns Hopkins Home Health also was visited, as they receive a few referrals from Erickson per year, based on the patient’s request.

4. In general this is not possible today because different sites use different, usually proprietary, lists of drug names.