business

A HIMSS Guide to Participating in a Health Information

Exchange

HIMSS Healthcare Information Exchange HIE Guide Work Group White Paper

November 2009

© 2009 Healthcare Information and Management Systems Society (HIMSS). 1

Table of Contents Section 1 – Introduction …………………………………………………………………………………………………………. 5

Target Audience(s)……………………………………………………………………………………………………………….. 5 How to Use This Guide…………………………………………………………………………………………………………. 6

Section 2 – Defining the HIE…………………………………………………………………………………………………… 6 What is an HIE? …………………………………………………………………………………………………………………… 6 The National Perspective ………………………………………………………………………………………………………. 7 HIE Commonly Offered Services …………………………………………………………………………………………… 8 HIE Content Examples………………………………………………………………………………………………………… 14

Section 3 – Different Health Information Exchange (HIE) Models…………………………………………. 14 The Centralized Model………………………………………………………………………………………………………… 15 The Decentralized or Federated Model………………………………………………………………………………….. 17 The Hybrid Model………………………………………………………………………………………………………………. 19 The Health Record Banking Model ………………………………………………………………………………………. 20 International Models …………………………………………………………………………………………………………… 20 State-Led vs. Community-Based Models ………………………………………………………………………………. 21

Industry Drivers ……………………………………………………………………………………………………………… 22 The Business Models ………………………………………………………………………………………………………….. 22

Section 4 – Common Technology Approaches and Data Standards………………………………………… 23 Technology Building Blocks ……………………………………………………………………………………………. 23

Network Infrastructure………………………………………………………………………………………………………… 23 HIE Applications………………………………………………………………………………………………………………… 24 Middleware ……………………………………………………………………………………………………………………….. 24

Integration Engine ………………………………………………………………………………………………………….. 24 Patient Matching Algorithms and Enterprise Master Patient/Person Index (EMPI) …………………….. 25

Proprietary Products ……………………………………………………………………………………………………….. 25 Open Source Products……………………………………………………………………………………………………… 26

Record Locator Service……………………………………………………………………………………………………….. 26 Provider Matching………………………………………………………………………………………………………………. 28 Applicable Standards ………………………………………………………………………………………………………….. 28

About Standards……………………………………………………………………………………………………………… 28 Core Standards……………………………………………………………………………………………………………….. 28 Standards for Transactions ………………………………………………………………………………………………. 29

Section 5 – Evaluating a Potential HIE Opportunity ……………………………………………………………… 31 Understanding the Goals and Philosophy of the HIE ………………………………………………………………. 32 Understanding to What Your Organization will need to Commit by Participating in an HIE ……….. 33 Understanding the Prevalence of Nationally-Accepted Standards …………………………………………….. 33 Understanding the Value for Users of the HIE Information and Data………………………………………… 34 Understanding the Economics and Financial Sustainability of the HIE……………………………………… 35 Understanding Risks …………………………………………………………………………………………………………… 36 Understanding Applicable Regulations …………………………………………………………………………………. 36 Understanding Leadership and Governance …………………………………………………………………………… 36 Understanding the HIE’s Maturity………………………………………………………………………………………… 37

Section 6 – Conclusion – Making Your Decision ……………………………………………………………………. 39 Appendix A – HIE Evaluation Checklist……………………………………………………………………………….. 40 Appendix B – Understanding Applicable Regulations……………………………………………………………. 46

HIPAA ……………………………………………………………………………………………………………………………… 46

© 2009 Healthcare Information and Management Systems Society (HIMSS). 2

Privacy Rule…………………………………………………………………………………………………………………… 46 Security Rule …………………………………………………………………………………………………………………. 47

American Recovery and Reinvestment Act ……………………………………………………………………………. 47 Business Associates ………………………………………………………………………………………………………… 47 Marketing/Sale of PHI…………………………………………………………………………………………………….. 48 Electronic Health Records ……………………………………………………………………………………………….. 48 Disclosures…………………………………………………………………………………………………………………….. 48 Breach Notification…………………………………………………………………………………………………………. 48 Education Programs………………………………………………………………………………………………………… 48 Enforcement/Penalties …………………………………………………………………………………………………….. 48

State Laws …………………………………………………………………………………………………………………………. 48 Appendix C – SandlotConnect® Case Study …………………………………………………………………………. 50

Background ……………………………………………………………………………………………………………………….. 50 Regional Business Environment & Demographics ……………………………………………………………… 50 Factors Aligning and Driving Local Stakeholders ………………………………………………………………. 50

Operations …………………………………………………………………………………………………………………………. 50 Vision, Mission and Guiding Principles…………………………………………………………………………….. 50 Governance and Management Structure…………………………………………………………………………….. 51 Service Offerings ……………………………………………………………………………………………………………. 52 Technical Architecture…………………………………………………………………………………………………….. 52 Unique Operational Considerations…………………………………………………………………………………… 52

Sustainability……………………………………………………………………………………………………………………… 52 Business Model Summary ……………………………………………………………………………………………….. 52 Realized Benefits ……………………………………………………………………………………………………………. 53

Appendix D – Indiana HIE Case Study…………………………………………………………………………………. 54 Background ……………………………………………………………………………………………………………………….. 54

Regional Business Environment and Demographics……………………………………………………………. 54 Factors Aligning and Driving Local Stakeholders ………………………………………………………………. 54

Operations …………………………………………………………………………………………………………………………. 54 Vision, Mission and Guiding Principles…………………………………………………………………………….. 54 Governance and Management Structure…………………………………………………………………………….. 55 Service Offerings ……………………………………………………………………………………………………………. 55 Technical Architecture…………………………………………………………………………………………………….. 55

Sustainability……………………………………………………………………………………………………………………… 55 Business Model Summary ……………………………………………………………………………………………….. 55 Realized Benefits ……………………………………………………………………………………………………………. 56

Appendix E – Louisville Health Information Exchange, Inc. (LouHIE) Case Study………………… 57 Background ……………………………………………………………………………………………………………………….. 57

Regional Business Environment & Demographics ……………………………………………………………… 57 Factors Aligning & Driving Local Stakeholders …………………………………………………………………. 57

Operations …………………………………………………………………………………………………………………………. 58 Vision, Mission, and Guiding Principles……………………………………………………………………………. 58 Governance and Management Structure…………………………………………………………………………….. 58 Service Offerings ……………………………………………………………………………………………………………. 59 Technical Architecture…………………………………………………………………………………………………….. 60

Sustainability……………………………………………………………………………………………………………………… 63 Business Model Summary ……………………………………………………………………………………………….. 63 Marketing Plan……………………………………………………………………………………………………………….. 63 Risk Management …………………………………………………………………………………………………………… 65

© 2009 Healthcare Information and Management Systems Society (HIMSS). 3

Realized Benefits ……………………………………………………………………………………………………………. 68 Appendix F – Glossary …………………………………………………………………………………………………………. 70 Acknowledgments ………………………………………………………………………………………………………………… 80

© 2009 Healthcare Information and Management Systems Society (HIMSS). 4

Section 1 – Introduction When the idea for this guide was first conceived, meaningful use was not in the forefront of healthcare discussions and the landmark 2009 Health Information Technology for Economic and Clinical Health (HITECH) Act in the American Recovery and Reinvestment Act (ARRA) was not yet a reality. Even with the passing of HITECH, the original objective of this guide remains important to the current healthcare discussion. The focus of this guide is to provide individual stakeholders with a tool that assists in the decision-making process of joining a health information exchange (HIE). For the beginner, the tool will provide basic background information that most people should understand before engaging with an HIE. Building upon the background information presented in this paper, a list of questions is provided that stakeholders may use as a guide to explore participation in an HIE. The suggested questions are intended to provide a clear-cut decision process to guide organizations’ choices. This guide does not provide insight into meaningful use as outlined in HITECH and is not intended to be a comprehensive guide nor will it lead a stakeholder in making the right choice. Participating in a local HIE is an important step for organizations that want to establish the foundation for improving patient safety, quality of care and decreasing the cost of health-related activities. There are many published reports that cite statistics on patients that die every year due to missing or inadequate information at the point of care. Other industries have placed importance on obtaining reliable information used in decision making. This reliance on information has transformed many other industries in the past 15 years. Healthcare has been slow to transform in that the information needed is in so many disparate locations. An HIE attempts to pull disparate information together so that it becomes more useful; one element of a sustainable model that will help transform the industry. Meaningful use is an essential factor in health reform. This guide will continue to evolve in 2010 and provide guidance on how an HIE can be a tool in healthcare transformation and achieving meaningful use. Target Audience(s) This guide is intended to be used by any stakeholder faced with the challenge of making a decision on whether to participate in an HIE. The stakeholders that can have an interest in providing or obtaining information from an HIE are defined as:

• Consumers, especially seniors; • caregivers; • physicians and clinicians; • hospital provider organizations; • hospital administrators; • third-party payors and health plans, including Medicare and Medicaid; • employers; • government agencies; • public health departments; • retail providers; • durable medical equipment providers; and • educators/researchers.

© 2009 Healthcare Information and Management Systems Society (HIMSS). 5

How to Use This Guide This guide is divided into six sections, plus appendices. The first four sections provide the background necessary to understanding what an HIE is, followed by common approaches and data standards. The appendices include case studies that can be helpful to understand the different models, as well as the glossary of terminology. Section 5 and the checklist identify the questions that should be asked in evaluating a particular HIE opportunity. Section 2 – Defining the HIE What is an HIE? An HIE automates the transfer of health- related information that is typically stored in multiple organizations, while maintaining the context and integrity of the information being exchanged. An HIE provides access to and retrieval of patient information to authorized users in order to provide safe, efficient, effective and timely patient care. Formal organizations have been formed in a number of states and regions that provide technology, governance and support for HIE efforts. Those formal organizations are termed health information organizations (HIO) or even regional health information organizations (RHIO).

Figure 1. HIE Overview

HIEs are formed by a group of stakeholders from a specific area or region to facilitate the electronic exchange of health-related information for the purpose of improving healthcare for a defined population. Thus, HIEs provide the ability for participating organizations to safely and securely share health information with authorized providers to improve and expedite the clinical decision-making process. An HIE is not an information system within a single organization, nor is it one that has a single directional flow of information. A true HIE involves multi-directional flows of information electronically between providers (hospitals, physicians, clinics, labs) and other sources of administrative or clinical information provided by consumers, health plans, employers, local, state or national organizations. The HIE is a tool to facilitate the aggregation of data into a longitudinal electronic health record for all citizens. Below are a few definitions that are instrumental to understanding what an HIE is and what it is not. Other definitions will be found in the appendix at the end of this white paper. Definitions: In April 2008, the National Alliance for Health Information Technology (NAHIT) released “Defining Key Health Information Technology Terms.”1 This report to the Office of the National Coordinator (ONC) for Health Information Technology was an effort to eliminate the 1 http://healthit.hhs.gov/portal/server.pt/gateway/PTARGS_0_10741_848133_0_0_18/10_2_hit_terms.pdf.

© 2009 Healthcare Information and Management Systems Society (HIMSS). 6

ambiguity of meaning and to create a shared understanding of key terms. According to NAHIT, the three network terms are HIE, HIO and RHIO and are defined as:

HIE: The electronic movement of health-related information among organizations according to nationally recognized standards. HIO: An organization that oversees and governs the exchange of health-related information among organizations according to recognized standards. RHIO: An HIO that brings together healthcare stakeholders within a defined geographic area and governs health information exchange among them for the purpose of improving health and care in that community.

The following defines key terms related to HIE: EHR: An electronic record of health-related information on an individual that conforms to nationally recognized interoperability standards and that can be created, managed and consulted by authorized clinicians and staff across more than one healthcare organization. EMR: An electronic record of health-related information on an individual that can be created, gathered, managed and consulted by authorized clinicians and staff within one healthcare organization. PHR: An electronic record of health-related information on an individual that conforms to nationally recognized interoperability standards and that can be drawn from multiple sources while being managed, shared and controlled by the individual or the health consumer. NHIN: A goal of the United States government is to “…digitize patients’ health records and medical files and create a national network to place the information in.”2 The nationwide health information network (NHIN)—currently in its developmental stage—will ultimately provide a secure, nationwide, interoperable health information infrastructure that will connect providers, consumers and other stakeholders. The ONC refers to NHIN as a “network of networks” (hhs.gov) which connects all healthcare information providers, including HIEs, health plans, providers, federal agencies and many more through a national health exchange.”3

The National Perspective Congress has recognized the importance of moving the country toward adoption of EHRs and HIEs. In 2004, President George W. Bush provided leadership for the development and implementation of a national health IT program to improve healthcare quality and efficiency.4 His executive order created the Office of the National Coordinator for Health Information Technology (then called ONCHIT, now ONC) whose mission is to provide leadership for developing and promoting health IT as a means to improve the quality and efficiency of healthcare in the United States. The American Recovery and

2 World Privacy Forum Web site. Available at: www.worldprivacyforum.org. 3 NHS Connecting for Health Web site. Available at: www.connectingforhealth.nhs.uk. 4 The White House Office of the Press Secretary. Executive Order: Incentives for the Use of Health Information Technology and Establishing the Position of the National Health Information Technology Coordinator. Washington, DC. April 27, 2009.

© 2009 Healthcare Information and Management Systems Society (HIMSS). 7

Reinvestment Act of 2009 (ARRA) requires a minimum of $300 million to support efforts to build HIEs which promote the usage of EHRs. Grants will be available for states that can demonstrate readiness to develop HIEs. To qualify, each state must establish or facilitate the establishment of governance structures, technical infrastructure, and privacy and security measures. A state-designated entity could be a state governance structure or a separate nonprofit entity.5 As more information becomes available regarding ARRA and the definition of meaningful use, HIE resources and tools will require updating. HIE Commonly Offered Services An HIE is a complex set of technologies which enables the aggregation of health-related information for an individual, as well as offering a number of specialized services for the community it serves. Usually, HIE capabilities are described as a set of electronic “services” that allow the HIE to interact with participating systems in a consistent, reliable way. The illustration below highlights an architectural view of the different services that one can expect from an HIE.6 From a clinical or business perspective, access channels contain types of services such as physician Web portals, PHRs, clinical messaging, clinical interoperability and exchange of data from electronic medical records, as well as the common administration of security services necessary to ensure that data is used appropriately.

Figure 2. HIE Implementation Architectural View

5 Advisory Board Daily Briefing, 2-17-2009. 6 Fairchild Consulting, Greater Rochester IPA Architecture Briefing, 2008.

© 2009 Healthcare Information and Management Systems Society (HIMSS). 8

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Secured Gateway / Web Portal (VPN, Secured Web Services)

Protocol Adaptors

HIE Application Adaptors

Message Routing/Maping

Services Queuing Services OrchestrationServices

Audit Logs Clinical Protocols & Guidelines

Business Rules

Record Locator Information

Patient Demographics &

Registry Patient Clinical Health Records

Clinician Information &

Registry

Security Policy

Privacy Services Anonymization

Patient Consent Patient Access

Security Services Credentialing Identity Mgmt

(Authentication) Vocabulary

Services EMPI

Services

Record Locator Services

Longitudinal Record Services Assembly of Records

Reporting Services

Operational Decision Support Bio-Surveillance

HIPAA

Shared Message Services

General Services Auditing Logging

Error Handling

Physician Practices Patient’s PHR Hospital Clinicians

Pharmacies Reference Labs

Imaging Centers Ambulatory EMR Systems

Hospitals

Lab Order Entry Systems

Practice Management Systems

Public Health Reporting

Connected Communities

Communication BusInfrastructure Services HIE Services

Patient Consent Rules

Connected Communities

Message Bus – Data Transport – HIE Gateways

SMSAmbulatory EMR Systems

Work Flow Services

Vocabulary Services

Vocabulary Secured Health

Messages

To provide these services, HIEs are designed to use one to two forms of data sharing methods, called “push” and “pull” technologies. Understanding the difference between how clinical data is obtained in an HIE is important because it will dictate the method in which information is shared. “Portals are a pull (query) technology, requiring physicians to search for the data they need. Push technology, on the other hand, automatically delivers clinical data to the user in the desired format: paper, fax, electronically to a viewer or electronically to an EMR of the physician’s choice. Best-in-class push technologies also allow for tailoring of various types of results and data delivery.”7 In addition, “a good HIE solution should provide a push technology, delivering the vast majority of hospital and other results, while also providing a query solution for the few use cases where there doesn’t yet exist a patient-physician relationship that would enable push delivery.”8 HIE’s must provide access to information regardless of the technology in use or not in use. There are still a large percentage of physician offices that do not have access to electronic medical records. Understanding this technology is important for determining which methods are most appropriate for obtaining and viewing patient data. The following information describes the vast number of stakeholders facing (access channels) services that may be rendered from an HIE. Not all HIE’s provide all of these services.

7 Massengill S. Can portals deliver? ADVANCE for Healthcare Information Executives. March 2009;(2). 8 Massengill S. Can portals deliver for hospitals and integrated delivery networks? HIMSS News. March 2009. http://www.himss.org/ASP/ContentRedirector.asp?ContentID=68755

© 2009 Healthcare Information and Management Systems Society (HIMSS). 9

Patient Portals: Healthcare patient portals were initially created and deployed early by hospitals “…for affiliated or employed physicians as a single place where they could remotely access various hospital-based applications… Single sign-on tools were developed to enable one login event to be used by multiple applications, and context management tools were built to enable patient context to be maintained as the user switched applications.”9 As a leading example, the physician-driven Ann Arbor Area Health Information Exchange “…started with four group practices that use the same EHR system and access data from two hospitals. Now, the HIE is testing a Web portal to enable other physicians, including those without EHRs, to participate.”10 The Western North Carolina Health Network is another example, with 16 independent hospital systems jointly providing geographically dispersed clinicians with timely and comprehensive patient information.11 The next section will describe the different types of storage infrastructures for healthcare portals. Some require a centralized data repository where those who seek the information go to one location to search for patient data. Others do not use a centralized data repository but rely on a record locator service to identify the sources of data on the patient. This approach requires all data sources to be available at all times due to its’ real-time secure layer that sits between the requesting provider and the sources of information. Whatever form of storage is used, Web portals are a way to centrally search for patient information. Using a portal as a single source to search and access patient information is much more efficient than obtaining patient-related health records manually or establish individual access from numerous healthcare systems. As more physicians have access to electronic medical records, the portal technology will evolve to make use of automated workflow so that the physician can access his or her own system to retrieve information on patients. Clinical Messaging: Clinical messaging, which can utilize either push or pull technology, has become a key service in a successful model of an HIE. Early HIEs saw this method of sharing information as a way of providing early benefits to the health community. “A clinical message service provides a secure, electronic infrastructure to automate the delivery of health data to any site where clinical patient care decisions are made. For example, a clinical message service can automate result reporting from a laboratory to a clinic (i.e., replace a fax or other printed results with an electronic file). A clinical message service can also enable secure electronic forwarding of reports between clinicians to facilitate patient care.”12 A thriving southern Indiana information exchange recognized the importance of having clinical messaging as a primary method for patient data sharing and has utilized this service as a method for delivering clinical results. This effort “…enhanced the value of hospital repositories by mobilizing the data to EMR and non-EMR physician practices.”13 In the Indiana HIE, clinical messaging is also used as an alternative to a Web portal. “With Clinical Messaging, hospitals have less need to support complex single sign-on (SSO) portals, which are getting more difficult to maintain as ambulatory care EMR adoption improves. Besides being isolated from physicians’ IT systems, the principal limitation with portals is that physicians are not notified when new data becomes available. These silos of information are merely storehouses for physicians to access.”9 Deciding to use clinical 9 Massengill S. From portals to HIE: can portals deliver for hospitals and health systems? Advance for Health Information Executives. March 11, 2009. Available at: http://health-care-it.advanceweb.com/editorial/content/editorial.aspx?cc=195508. 10 Goedert J. Lessons from the HIE front. Health Data Management. February 1, 2009. Available at: http://www.healthdatamanagement.com/issues/2009_61/27632-1.html 11 WNC Health Network Web site. Available at: http://www.wnchn.org/.. 12 Redwood Med Net Web site. Available at: http://www.redwoodmednet.org/projects/hie/index.html. 13 Rowland T. HealthLINC: lessons learned from first generation of operational HIEs. HIMSS News [online]. February 4, 2009. Available at: http://www.himss.org/ASP/ContentRedirector.asp?ContentID=68905.

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messaging, healthcare portals or a combination of both, is a vital choice that each healthcare organization must make. HIEs use clinical messaging to improve the timeliness of communication and reduce the cost of communication. Without an HIE with clinical messaging, communication is labor intensive and costly if built with proprietary linkages. Clinical Interoperability: Many healthcare organizations throughout the United States have already invested heavily in existing healthcare information systems. The key to a successful HIE is the ability to promote interoperability with disparate systems to ensure that healthcare providers can electronically exchange patient data residing in several different foreign systems. Today, access to important clinical data resides in the silos of electronic medical records. It is impossible to gather all of the necessary information without clinical interoperability. “Health Information Exchange (HIE) is a long-term vision that results in interoperability that will improve healthcare processes with respect to safety, quality, cost, and other indicators. Progress is being made through planning, pilot programs, standards adoption and implementing HIE technologies of varying degrees of sophistication. A number of voluntary industry efforts show promise; however, we are still a long way from realizing the goal. The fact is, building a truly interoperable national HIE is not easy, either culturally or technically. The key to reaching the clinical interoperability goal is to capitalize on necessary tools, standards and resources that meet current practical (funded) objectives in such a way that incrementally creates an HIE infrastructure. Then, organizations can add capacity and functionality in order to accommodate complex, bandwidth-intensive clinical information and connectivity, interoperability and security mechanisms.”14 Electronic Health Record (EHR): In order to successfully participate in providing patient data to an HIE, healthcare providers must face the challenge of implementing a longitudinal EHR. Such challenges have traditionally been tied to the difficulties relating to institutional adoption and investment commitments required to achieve clinical interoperability with other organizations. One step towards creating an electronic health record requires that individual organizations first implement their own electronic medical records. With ARRA, hospitals and physicians will receive incentives to automate their patient records. Hospital incentives start at $2 million annually, with an additional reimbursement amount tied to annual Medicare discharge volume, and decrease for each subsequent year during the five-year incentive period. Non-hospital-based physicians and physician groups can expect to receive funding if they have qualifying EHR systems in place by 2011.15 Several other qualifying criteria must be met in order to receive the funding and further clarification is needed on various definitions. Details from the federal government will be forthcoming on the definitions of qualifying criteria and certification standards as outlined in ARRA. Personal Health Record (PHR): The PHR is a tool that individual health consumers can use to collect, track and share past and current information about their personal health or the health of a family member. Sometimes this information can save money and the inconvenience of repeating routine medical tests. Even when routine procedures do need to be repeated, the PHR can give providers more insight into an individual’s personal health story. When connected to an HIE, the PHR has the potential of becoming a critical component of the comprehensive, longitudinal health record that serves individual health consumer, physicians, insurers, employers and other stakeholders. Components of a PHR may include: important reminders for health maintenance and preventive care tailored to each patient; journals to track diet, exercise, appointments, past and current providers and

14 Watkins, Larry Making Meaningful Progress Toward HIE. September 9, 2009. 15 Silva C. Practices paperless before 2012 could maximize Medicare bonuses. American Medical News. March 16, 2009. Available at: http://www.ama-assn.org/amednews/2009/03/16/gvsa0316.htm.

© 2009 Healthcare Information and Management Systems Society (HIMSS). 11

dental and eye records; and links to historical care summaries that provide individuals with a comprehensive healthcare diary for patients and their families. The PHR must provide for consumer control and data additions as well as integrate with other clinical and educational data sources. Record Locating: The HIE maintains the ability to identify individuals and to link them to potential sources of information through Person Identification (PI) and registry services within a directory structure. Ensuring accurate identification is a challenge in an HIE, as each participating organization will have its own medical record number or person identifiers. In the absence of a national unique identifier for healthcare, a matching process is used for positive person identification when any participating organization seeks to find information within the HIE for a given person. In addition, a record locator service (RLS) may be needed. In some HIEs where a decentralized (federated) architecture is used, the RLS identifies where data may reside for a given person in order to feed that back to the requesting organization. In a consolidated model, enterprise master patient index (EMPI) identifies the patient and manages the patient’s related data as the HIE receives demographic and/or clinical data into the HIE environment. Once the patient is identified, common data elements such demographic and insurance information, diagnoses, allergies, health problems, medication and other pertinent clinical data are made available. Administrative Services: Simplification of administrative services is highly desirable by providers for accessing claims, authorization, payment systems and data via the HIE network. Administrative services may also support gathering patient demographic and other non-clinical information. In addition, HIE can also facilitate the referral process from both an administrative and clinical standpoint. A comprehensive referral process allows a seamless transfer of information from the primary care provider, to the specialist with a number of stops and checks with insurers. A technically mature HIE should have all of the linkages to streamline this process. Disease Management: Some of the more advanced HIEs include chronic disease management (CDM) as a service offering. CDM typically requires the coordination of care with one or more specialists. The average Medicare patient sees approximately six physician specialists annually. The recent policy efforts to coordinate chronic disease (also called patient medical home, advanced medical home or patient-centered medical home) recognizes the need for proper information technology tools and infrastructure to implement this plan. HIEs today provide value to physicians involved with CDM through the aggregation of data from various sources into patient registries (depending upon the disease being monitored), allowing quick and efficient retrieval and analysis of pertinent data without the effort of data re-entry and/or searching many sites. HIEs are an enabler for effective CDM through the exchange of information across the providers. This allows the HIE to be the enabler for various caregivers to coordinate care among specialists, the primary care physician and the patient. Eventually, providers should be able to manage chronic conditions from within their EHR systems with data provided by the HIE. HIEs can foster the collection of data elements on various chronic conditions in a computer readable form for use in chronic disease profiles, charts of levels of key indicators (e.g., hemoglobin A1C for diabetics), and triggers for recall of patients who have undetected loss of control. Tracking of chronic disease indicators is not yet universal, thus it is important to add these chronic disease measures to the list of data to be exchanged.

© 2009 Healthcare Information and Management Systems Society (HIMSS). 12

The next evolution of HIE is looking to integrate disease management systems with community public and private research programs. The Louisville Health Information Exchange is looking to provide the service based on a consumer consenting to participate in the research programs.16 Community and Public Health: New, more complex ways of sharing data are also arising with the advent of the HIE. These collaborative organizations focus on health data exchange in a community, county or state-wide basis. They have a wide and varied set of participants (providers, labs, hospitals, health plans, public health agencies, pharmacies and patients/citizens). HIEs may involve public health as a key player in their formation and operation. While the emphasis is typically on exchanging clinical data to support patient care, some health data exchanges focus on health services data instead of—or in addition to—their clinical needs. As HIEs develop and are deployed, and both public health and private healthcare systems continue to evolve and develop, system integration within public health will no longer be enough. Public health systems will need to become interoperable with other systems inside and—especially—outside the agency. For public health agencies developing integrated health information systems, new risks and benefits are emerging rapidly on the horizon. The ways in which public health is increasingly exchanging information with healthcare providers, hospitals, government, insurers and families demand a closer look at the networked information environment. A public health registry is defined as “…an organized system for the collection, storage, retrieval, analysis, and dissemination of information on individual persons who have either a particular disease, a condition (e.g., a risk factor) that predisposes to the occurrence of a health-related event, or prior exposure to substances (or circumstances) known or suspected to cause adverse health effects.”17 As systems become more integrated—especially across the public-private boundary—the role of registries will change. In some cases, their very existence may be called into question. Information is one commodity that gains value the more it is used. Public health stands to benefit from a landscape of increasing opportunity to exchange information with more sources and users. One area is the growth of HIEs in which public health runs the risk of being excluded. Public health can become an integral player in the HIE scenario by embracing and promoting standards, opening access to its program-based database information, and organizing focus groups of stakeholders to make sure that everyone—including public health stakeholders—has a place at the table. Value-Added Services: In the creation of a sustainable financial model, HIEs are starting to offer additional value-added services. These value-added services may come in the form of additional Web- based products or services that an individual can choose to use. Typically, these services are charged separately based on the perceived value to the individual. Examples of value-added service may be the receipt of educational notices from the community gardening club, providing access to electronic medical record systems for physicians or access to a diet counter service. They are services that one can choose to use or not use, and individuals will generally pay a subscription fee to use the services they value.

16 LouHIE Business Plan. Louisville Health Information Exchange Inc. May 20, 2008. 17 California HealthCare Foundation. Chronic Disease Registries: A Product Review. May 2004. Available at: http://www.chcf.org/topics/chronicdisease/index.cfm?itemID=102741.

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HIE Content Examples HIEs are implemented to support specific functional needs of their stakeholders. In information technology parlance these are often referred to as “use cases” or “use narratives.” Over the past several years a common set of use cases have been examined, and HIEs have developed to support them through the services they offer. In addition to the information below, the appendix also includes a set of case studies which provide additional details related to services that a few HIEs in the nation are providing. Testing and Results: When physicians cannot readily find a lab or x-ray, they will typically reorder the study in order to expedite the clinical process. This is a tremendous waste of resources and has a cost ripple effect throughout the entire continuum of care. Once the HIE has implemented interfaces/access to all diagnostic sources, physicians can view orders and results for labs, radiology and other clinical values online as part of a streamlined HIE workflow process. Through a common user interface, providers can get a complete view of all current and historical diagnostic studies, reports, as well as images (e.g., x-ray, EKG, etc.), thus be able to provide better care through an expedited diagnostic process by giving physicians the capability to locate critical clinical information anytime, anywhere. By providing ubiquitous access to past orders and results, HIEs can foster a marked reduction in redundant testing and improve care. Other Clinical Documentation: Other pertinent clinical information can be made available on the HIE. Medications, allergies, problem lists and other documentation are just some examples of data providers need to access for each patient visit. For example, on an HIE, active allergies and medications can be codified and stored for each patient. These profiles are then shared so providers can view the entire medication record for drugs that have been prescribed by any/all participating physicians for a particular patient. This can improve patient safety by preventing drug/allergy interactions. In addition, this feature will reduce the amount of time a community physician or specialist will need to spend reviewing medication lists, thus providing more available time for discussion and examination of patients. Active problem lists are also an important clinical data need for HIEs. Specified medical problems related to each particular patient, with specific dates for the onset of a given problem, as well as a date that it was resolved, are key data elements that can be shared on an HIE. Having this data readily available, physicians can provide a more accurate and timely diagnosis by viewing all problems that have been documented by caregivers on the HIE. Thus, therapeutic actions are more efficient and targeted for active and focused problem resolution. Specialists spend less time diagnosing known problems and can target efforts toward more pressing issues. Finally, other documents, such as histories, physicals and progress notes, can be stored on the HIE, streamlining the documentation process for more accuracy and speed of inter-practice-provider communication. The sharing of clinical documents promotes better, faster and more efficient physician/staff/patient communication. And because there is less time spent on paper-based administrative tasks, there is more time for direct patient care. Section 3 – Different Health Information Exchange (HIE) Models There are various conceptual models of HIEs; each presents issues of interoperability, development and sustainability, and privacy and security concerns for health environments, clinical providers and

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