Ensuring the National Health Information Infrastructure Benefits Persons with Mental and Substance-Use Conditions
Health care providers’ ability to obtain information quickly on a patient’s health, health care, and potential treatments and to share this information in a timely manner with other providers caring for the patient is essential to the delivery of safe, patient-centered, coordinated, and effective health care. To meet this need, major public- and private-sector collaborations are under way to develop three essential components of a National Health Information Infrastructure (NHII): (1) electronic health record (EHR)1 systems with decision support for clinicians, (2) a secure platform for the exchange of patient information across health care settings, and (3) data standards that will make shared information understandable to all users (IOM, 2004). Efforts also are under way in the public sector to create information systems for mental and substance-use health care. Ensuring that the developing NHII serves consumers of health care for mental and/or substance use (M/SU) conditions as well as it does those with general health care needs is essential to improving the quality of M/SU health care.
However, M/SU health care currently is not well addressed by NHII initiatives, nor are separate public-sector efforts aimed
EHRs have a variety of names, including automated medical record, computer-based patient record, electronic medical record, electronic patient record, and others (Brailer and Terasawa, 2003).
at creating information systems for M/SU health care well coordinated with NHII initiatives. M/SU health care also lags behind general health care in its use of information technology (IT). To realize the potential of the NHII for consumers of M/SU health care, NHII initiatives and public-sector efforts to develop specialized information systems for M/SU health care need to take advantage of each other’s expertise and capabilities. Doing so will ensure that the NHII provides relevant information to M/SU health care consumers, providers, payers, and oversight organizations, and that providers serving in both the public and private sectors do not face redundant or conflicting information demands. The committee recommends actions to (1) coordinate the activities of the NHII and public-sector M/SU IT initiatives, (2) bring M/SU expertise to the development of the NHII, and (3) support individual M/SU clinicians in their use of IT.
A STRONG INFORMATION INFRASTRUCTURE IS VITAL TO QUALITY
Crossing the Quality Chasm (IOM, 2001) and several preceding and subsequent reports from the Institute of Medicine (IOM), the federal government, and leading private-sector organizations (IOM, 2004; National Committee on Vital and Health Statistics, 2001; Thompson and Brailer, 2004) emphasize the vital role of information technology (IT) in the safety, effectiveness, patient-centeredness, timeliness, efficiency, and equity of health care. These organizations and many others find that a strong IT infrastructure is crucial to:
Supporting consumers in illness self-management and marketplace choices.
Supporting providers in the delivery of evidence-based clinical care.
Coordinating care across clinicians, settings, and time.
Facilitating performance and outcome measurement.
An example of the role of IT in achieving improved quality of care is presented in Box 6-1.
In addition to its uses in coordinating care, IT has begun to be used to support the delivery of treatment for mental and substance-use conditions—over the World Wide Web, by e-mail, and through other technology-mediated interactions (Flanagan and Needham, 2003) (see Chapter 7). Determination of research priorities and public policy decisions about the best allocation of scarce public dollars also can be facilitated through
Mark is a 38-year-old veteran with schizophrenia who receives health care at a Veterans Administration (VA) medical center. He lived with his parents until they died 2 years ago and has since lived with his brother Sam and Sam’s family. He has not worked recently, but he volunteers at a local library and lives off his military pension. Recently he enrolled in EQUIP, a project aimed at improving care for people with schizophrenia by applying illness management principles effective in treating other chronic illnesses. EQUIP uses the VA’s electronic health record (EHR) enhanced by an information system that supports management of care, structured psychiatric evaluations, and secure messaging between clinicians. As a result, Mark’s treatment team was alerted to several emerging problems that might have been missed with the old paper chart system.
The old paper charts included handwritten notes that were sometimes illegible and typically did not include useful psychiatric assessment data. The charts often arrived after a scheduled appointment, or not at all, and whether Mark had scheduled or kept medical appointments was unknown to his treatment team. With the enhanced EHR, Mark’s psychiatrist was able to review Mark’s full, up-to-date record, including the team nurse’s routine assessments of Mark’s symptoms and other problems. These assessments indicated chronic medical problems, including diabetes, a heart problem, a possible seizure disorder, obesity, and smoking. Several problems needing immediate attention were highlighted.
With the EHR and information system, the team received a list of previously scheduled and upcoming appointments. It was clear that Mark had missed multiple visits and was at risk for severe medical complications. The information system also indicated serious problems at home. With the previous paper charts, contact information and Mark’s preferences regarding family contact were not documented. Now, this information was easily at hand, and his brother was called. He told the team that Mark was having daytime sleepiness that led to his missed appointments and that Mark was awake late at night, disturbing the family, and overeating. Most disturbing was that he was irritable and combative when confronted by Sam about these problems. Sam wanted to help Mark and had promised their parents to care for him. But he did not know what to do.
Previously, communication among the team took place only when someone remembered to bring a patient up at the weekly team meeting. Now, team members received a regular report on the clinical status of each of the patients under their care. They used a secure electronic messaging system to discuss Mark’s problems. The team implemented a comprehensive behavioral program addressing sleep scheduling, caloric intake, exercise, and missed visits. Clinicians used the messaging system to update each other and ensure that their advice and instructions to Mark were consistent at each visit. The computer screen displayed updated messages when each clinician looked at Mark’s medical record. A clinician also reviewed a weekly EQUIP-automated appointment report and used it to remind the family about upcoming appointments.
Mark began making it to his appointments regularly. Sam was included in medication change decisions. He ensured that the new medications were taken correctly and reported any changes to the team. With time, Mark began to express an interest in living more independently and working for pay. By the end of the project,
he had moved to a residential group home, developed a better relationship with his family, improved his sleep habits, lost 10 pounds, and cut down his smoking. He was attending to his chronic medical problems through regular appointments and considering joining a vocational rehabilitation program.
SOURCE: Personal communication, Alexander S. Young and Amy N. Cohen, Greater Los Angeles Veterans Healthcare Center EQUIP project, on August 9, 2005.
technology-supported information systems. Crossing the Quality Chasm (IOM, 2001:165) found that IT “must play a central role in the design of health care systems if a substantial improvement in health care quality is to be achieved” and recommended that:
Congress, the executive branch, leaders of health care organizations, public and private purchasers, and health informatics associations and vendors should make a renewed national commitment to building an information infrastructure to support health care delivery, consumer health, quality measurement and improvement, public accountability, clinical and health services research, and clinical education. This commitment should lead to the elimination of most handwritten clinical data by the end of the decade.
The remaining sections of this chapter address (1) activities under way to build the National Health Information Infrastructure (NHII), (2) the need for attention to mental and/or substance-use (M/SU) conditions in the NHII, (3) health information infrastructure and technologies under development for M/SU health care in the public sector, (4) issues affecting the adoption of IT by individual M/SU clinicians, and (5) recommendations for integrating health care for M/SU conditions into the NHII.
ACTIVITIES UNDER WAY TO BUILD A NATIONAL HEALTH INFORMATION INFRASTRUCTURE
Strong commitment has emerged in both the public and private sectors to working together to develop an NHII for the United States. The NHII will consist of (1) electronic health record (EHR) systems with decision support for clinicians, (2) a secure platform for the exchange of patient information across health care settings, and (3) data standards that will make shared information understandable to all users (IOM, 2004).
There also is consensus that although creating the NHII requires a partnership of public- and private-sector leaders, the federal government needs to play a leadership role in several ways, including promulgating certain data and other IT standards (IOM, 2004; Thompson and Brailer, 2004). The federal government also needs to provide financial support in three main areas. First, federal funds should support the development of critical components of the NHII that are unlikely to receive support from private-sector stakeholders. These include the establishment of a secure platform for the exchange of data across all providers and maintenance of a process for ongoing promulgation of national data standards. Second, the federal government should provide financial incentives to stimulate private-sector investment in EHR systems through the use of special loans, payment incentives to providers, or other mechanisms. Finally, federal funding of safety net providers is needed to support their adoption of IT (IOM, 2004).
Development of the NHII is expected to take many years, perhaps as long as a decade (Thompson and Brailer, 2004).2 To jump-start the process, in 2004 the President established the Office of the National Coordinator for Health Information Technology (ONCHIT), charged with the following (DHHS, 2005b):
Serving as the senior advisor to the President and the Secretary of the Department of Health and Human Services (DHHS) on all health IT programs and initiatives.
Developing and maintaining a strategic plan to guide the nationwide implementation of interoperable EHRs in both the public and private health care sectors.
Coordinating the spending of approximately $4 billion for health IT programs and initiatives across the federal government.
Coordinating all outreach activities to private industry and serving as the catalyst for health industry change.
Three months later, ONCHIT’s National Coordinator put forth a framework for strategic action, The Decade of Health Information Technology: Delivering Consumer-centric and Information-rich Health Care, which included a 10-year plan to develop the NHII in partnership with the private sector. This plan addresses the development of EHRs, data standards, and interoperable technologies for the exchange of patient data across providers and settings of care (Thompson and Brailer, 2004).
Subsequently, in June 2005, DHHS announced the establishment of the American Health Information Community (AHIC), a commission of members from the public and private sectors, to advise the Secretary concerning efforts to develop IT standards and achieve interoperability for health IT. In particular, the AHIC is expected to develop recommendations for the following:
Protecting health information through appropriate privacy and security practices.
Achieving ongoing harmony of industrywide health IT standards.
Achieving a nationwide, Internet-based health information network that includes information tools, specialized network functions, and security protections for interoperable exchange of health information.
Accelerating the adoption of interoperable EHRs across the broad spectrum of health care providers.
Developing compliance certification and inspection processes for EHRs, including the infrastructure components through which EHRs can interoperate.
Identifying health IT standards for use by the National Institute of Standards and Technology (NIST) in an information processing standards-setting process relevant to federal agencies.
Identifying and prioritizing specific uses for which health IT is valuable, beneficial, and feasible.
Transitioning the work of the AHIC to a private-sector health information initiative (DHHS, 2005a).
Electronic Health Records3
An EHR system encompasses (1) the longitudinal collection of electronic information pertaining to an individual’s health and health care; (2) immediate electronic access—by authorized users only—to person- and population-level information; (3) provision of knowledge and decision support to enhance the quality, safety, and efficiency of patient care; and (4) support for efficient processes of health care delivery (IOM, 2003).
As noted in Chapter 5, although still a minority, increasing numbers of hospitals and ambulatory practices are investing in EHRs, although this
typically occurs in larger and “more wired” facilities—referred to as the “adoption gap” between large and small organizations (Brailer and Terasawa, 2003). Many hospitals have made progress in adopting certain EHR components, such as automated laboratory results. Use of EHRs is higher in ambulatory settings—approximately 5 to 10 percent of physician offices—but there is much variation in their content and functionality (IOM, 2004). The federal strategic framework identifies the total cost of EHRs (purchase price + implementation costs + maintenance costs + impact on operations) as the primary impediment to their more widespread adoption (Thompson and Brailer, 2004).
The federal government’s NHII strategic framework calls for the adoption of interoperable EHRs within 10 years (Thompson and Brailer, 2004). Several activities are under way to help achieve this goal. The IOM has provided a framework that should prove useful to accreditation organizations in establishing standards for EHR systems, as well as to providers in selecting vendors to design such systems (IOM, 2004). Standards for EHRs are under development by Health Level 7, the leading private-sector standards-setting organization (Thompson and Brailer, 2004). Three leading associations in health care information management and technology—the American Health Information Management Association, the Healthcare Information and Management Systems Society, and the National Alliance for Health Information Technology—have jointly launched the Certification Commission for Healthcare Information Technology to create a mechanism for the certification of health care information technology products, in particular EHRs (CCHIT, 2004).
The Veterans Health Administration has used an EHR system (VistA) for over two decades for its physicians, clinics, and hospitals. VistA is in the public domain, and in September 2005 Medicare released an evaluation version of the system (Vista-Office) for use by private physicians’ offices in computerizing their medical practices. This evaluation version will be assessed to determine the extent to which physician offices can implement the software effectively. The evaluation phase will also allow software vendors to improve upon the system and develop a version that meets any standards for EHRs (CMS, 2005). Medicare will provide doctors with lists of companies that have been trained to install and maintain the system. Because so many doctors participate in Medicare, the distribution of Vista-Office is viewed as a significant development in the advancement of EHRs (Kolata, 2005).
In addition to cost factors, efforts of both the public and private sectors to invest in IT are hampered by the lack of nationwide standards for the
collection, coding, classification, and exchange of clinical and administrative data. In particular, standards are needed in three areas:
Terminologies—the terms and concepts used to describe, classify, and code health care data and the processes that describe the relationships among the terms and concepts (see the discussion of needed improvements to coding for M/SU health care in Chapter 4).
Data interchange—standard formats for electronically encoding health care data elements and structuring the data elements as they are exchanged, and information models that define the relationships among data elements. Several standards for electronic data interchange have been endorsed by the Secretary of DHHS, including those for the exchange of clinical and administrative data. However, there remains a need to update these standards and create implementation guides, tests for conformance, and certification procedures to ensure that the standards actually work and are being used as intended (IOM, 2004).
Knowledge representation—methods for electronically representing health care literature, clinical guidelines, and similar sources of information for decision support so that they can be called upon automatically for the practitioner in response to triggers embedded in the EHR or other electronic clinical or administrative document (IOM, 2004).
Standardizing these data and processes requires not just a one-time effort, but an ongoing, permanent process for updating the standards as scientific knowledge, clinical practices, and information needs change. In October 2001, the federal government established the Consolidated Health Informatics interagency initiative to adopt interoperability data standards for federally operated and funded health care providers. Given that the federal government represents more than 40 percent of health care expenditures in the United States, this action is viewed as a powerful means of establishing such standards nationally across the public and private health care sectors (IOM, 2004). As of May 2004, the Consolidated Health Informatics initiative had approved 20 standards for adoption by the federal Departments of Defense, Veterans Affairs, Health and Human Services, State, Education, Energy, and Justice, as well as the Social Security Administration, General Services Administration, Office of Management and Budget, and Environmental Protection Agency (Anonymous, 2004).
In response to a request from the federal government to undertake a study of standards for health care safety reporting systems, the IOM (2004:12) made the following recommendation:
Congress should provide clear direction, enabling authority, and financial support for the establishment of national standards for data that support
patient safety. Various government agencies will need to assume major new responsibilities, and additional support will be required. Specifically:
The Department of Health and Human Services (DHHS) should be given the lead role in establishing and maintaining a public–private partnership for the promulgation of standards for data that support patient safety.
The Consolidated Health Informatics (CHI) initiative, in collaboration with the National Committee on Vital and Health Statistics (NCVHS), should identify data standards appropriate for national adoption and gaps in existing standards that need to be addressed. The membership of NCVHS should continue to be broad and diverse, with adequate representation of all stakeholders, including consumers, state governments, professional groups, and standard-setting bodies.
The Agency for Healthcare Research and Quality (AHRQ) in collaboration with the National Library of Medicine and others should (1) provide administrative and technical support for the CHI and NCVHS efforts; (2) ensure the development of implementation guides, certification procedures, and conformance testing for all data standards; (3) provide financial support and oversight for developmental activities to fill gaps in data standards; and (4) coordinate activities and maintain a clearinghouse of information in support of national data standards and their implementation to improve patient safety.
The National Library of Medicine should be designated as the responsible entity for distributing all national clinical terminologies that relate to patient safety and for ensuring the quality of terminology mappings.
The IOM also recommended that, after allowing a reasonable time for health care organizations to comply with national standards identified by the Consolidated Health Informatics initiative, the major government health care programs, including those operated by DHHS, the Veterans Administration, and the Department of Defense, should immediately incorporate these data standards into their contractual and regulatory requirements (e.g., Medicare conditions of participation).
A Secure Interoperable Platform for Exchange of Patient Information Across Health Care Settings
Sharing patient data across providers and settings of care requires an interoperable infrastructure to provide clinicians with access to critical health care information at the time of care delivery. To meet this need, the strategic framework for the NHII calls for (1) fostering of regional collabo-
rations; (2) a set of common national communication tools, such as web services architecture, security technologies, and a national health information network, that can provide low-cost and secure data movement; and (3) coordination of existing federal health information systems consistent with the NHII.
Several initiatives are now under way to develop regional collaborations for the creation of this interoperable infrastructure. First, the Health Resources and Services Administration (HRSA) has a cooperative agreement with the Foundation for eHealth Initiative to administer the Connecting Communities for Better Health program. The $2.3 million program provides seed funding and support to multistakeholder collaboratives within communities (both geographic and nongeographic) for the implementation of health information exchanges, including the formation of regional health information organizations (Thompson and Brailer, 2004). Second, in October 2004, the Agency for Healthcare Research and Quality (AHRQ) awarded $139 million in grants and contracts to promote the use of health information technology through the development of networks for sharing clinical data, as well as to support projects for planning, implementing, and demonstrating the value of IT (AHRQ, 2004). Finally, Connecting for Health, a public–private collaborative of more than 100 diverse organizations, has launched a prototype electronic national health information exchange based on common, open standards that will allow authorized users of three very different health information networks located in California, Massachusetts, and Indiana to share health information both within and among their local regions and communities. Teams in Mendocino, Boston, and Indianapolis will work with one another and with Connecting for Health to launch prototype networks that will connect the diverse technologies within each region’s health network and accommodate the differing social and economic profiles of the various communities (Markle Foundation, 2005).
In general, however, the committee finds that information needs pertaining to health care for M/SU conditions have not been well addressed in these initiatives.
NEED FOR ATTENTION TO MENTAL AND SUBSTANCE-USE CONDITIONS IN THE NHII
There is evidence that health care for M/SU conditions could be better addressed in the many efforts under way to develop the NHII. For example, in the “comprehensive catalogue of identifiable federal health information technology programs” included in the framework for strategic action submitted to the President by the National Coordinator for Health Information Technology, the listing of IT initiatives by DHHS agencies identifies
those of AHRQ, the Centers for Medicare and Medicaid Services (CMS), the Food and Drug Administration (FDA), the National Institutes of Health (NIH), the Indian Health Service (IHS), HRSA, and the Centers for Disease Control and Prevention (CDC), among others. There is no listing for the Substance Abuse and Mental Health Services Administration (SAMHSA) and its IT initiatives (Thompson and Brailer, 2004). A subsequent July 2005 update still contained no listing of SAMHSA’s IT initiatives (ONCHIT, 2005). Moreover, although SAMHSA is listed as a partner in the federal government’s Consolidated Health Informatics initiative, it is not listed as a member of any of the work groups consisting of staff from many federal agencies, including CMS, ARHQ, IHS, CDC, NIH, the Department of Defense, the National Library of Medicine, the National Aeronautics and Space Administration, the Social Security Administration, the Environmental Protection Agency, the U.S. Agency for International Development, and the National Center for Health Statistics, that have established vocabularies and standards for demographic, diagnosis and problem list, encounter, medication, interventions and procedures, billing, and other types of data (OMB, undated).
In addition, health care for M/SU conditions was not strongly represented among either the applicants or awardees in AHRQ’s 2004 awards of $139 million in grants and contracts to promote the use of health IT through the development of networks for sharing clinical data, as well as to support projects for planning, implementing, and demonstrating the value of IT. Of the nearly 600 applications for funding, only “a handful” had any substantial behavioral health content, and of the 103 grants awarded, only 1 specifically targeted M/SU health care.4
Finally, leaders of SAMHSA’s predominantly public-sector Mental Health Statistics Improvement Project (MHSIP) initiative (discussed below) note that MHSIP has not been “at the table” when broader data initiatives have been developed (Smith et al., 2004). Moreover, SAMHSA has identified important features of health care for mental conditions that are not captured in datasets approved under the Health Insurance Portability and Accountability Act (HIPAA). SAMHSA plans to address these issues through its Decision Support 2000+ (DS 2000+) initiative (Manderscheid and Henderson, 2003). Alternatively, these issues could be brought before the standards-setting groups referenced in the HIPAA legislation and used to inform the development of HIPAA-approved datasets that would serve both the private and public sectors. Moreover, because primary care providers are increasingly providing care for mental conditions, these impor-
tant features of mental health care need to be identified and considered with respect to data standards intended for primary care as well.
The committee concludes that mental and substance-use health care systems and treatment providers in both the public and private sectors should have a strong voice in efforts to create the NHII, including the creation of data standards, regional and community health information networks, and EHRs. Their participation will ensure that the characteristics of mental health and substance-use services with unique implications for the NHII will be addressed in its design, and that the benefits of the NHII will accrue to consumers of M/SU health care. Substantial expertise exists with regard to the clinical data needs for quality M/SU health care and the information systems required for M/SU clinical care, performance measurement, policy planning, and research. This expertise should be brought to bear in the various initiatives to build the NHII.
INFORMATION TECHNOLOGY INITIATIVES FOR HEALTH CARE FOR MENTAL/SUBSTANCE-USE CONDITIONS
Efforts to create components of an information infrastructure for mental and substance-use health care have been under way for some time—predominantly in the public sector under the auspices of SAMHSA. The knowledge and networks of experts generated by these activities should be invaluable resources in the development of the NHII. This section reviews these initiatives, as well as two issues pertinent to development of the NHII with respect to M/SU health care: the need to balance privacy concerns with data access, and the delivery of care for M/SU conditions by non–health care sectors, which may also be users of the NHII.
Information Infrastructure Initiatives for Health Care for M/SU Conditions
Mental health Decision Support 2000+ and statistics improvement program SAMHSA’s Decision Support 2000+ (DS 2000+) initiative is developing an integrated set of mental health data standards and information infrastructure to collect data on community health and population characteristics, enrollment in insurance programs, clients’ utilization of services and encounters, providers’ use of evidence-based practices, patient outcomes, and other performance measures. Work is nearly complete on core data standards for enrollment and encounter data; drafts of core datasets exist for the other data domains; and three parallel stakeholder-specific
datasets are being developed for state mental health systems, providers, and consumers/families. SAMHSA envisions that most of the data elements in the core person/enrollment, encounter, and financial datasets will be based on required HIPAA data elements; those not based on the HIPAA data elements will be “value added” DS 2000+ data elements. SAMHSA plans to implement these standards by embedding them into web-based software, which will be made available to the industry. SAMHSA has partnered with the Software and Technology Vendors’ Association (SATVA), which serves behavioral health and human services organizations, to implement the DS 2000+ data standards and develop a national online decision-support infrastructure. DS 2000+ will differ from the NHII in that it is envisioned to contain no individually identifiable data; instead, aggregate data will be deidentified at the provider or state level (Manderscheid and Henderson, 2003; Smith et al., 2004).
DS 2000+ is in part a product of the long-standing and ongoing activities of MHSIP. Sponsored initially by the National Institute of Mental Health and now by SAMHSA, MHSIP’s structure consists of an ad hoc policy group that provides national leadership, direction, and consensus development around issues related to mental health data collection, and of regional users groups that include all 50 states, the District of Columbia, and 6 U.S. territories. Over the past 25 years, MHSIP has produced data standards and standardized tools such as report cards and consumer surveys that are in wide use across all states’ public mental health systems. MHSIP’s FN-10 data standards serve as the foundation for many state mental health data systems. Various aspects of its Consumer-Oriented Mental Health Report Card are being implemented by more than 45 states and territories. The MHSIP Consumer Survey also is widely used in the public sector. This instrument served as part of the basis for the Experience of Care and Health Outcomes Survey developed by Harvard University and adapted by the National Committee for Quality Assurance (NCQA) for use as part of the Healthplan Employer Data and Information Set (HEDIS) performance measure set. Implementation of MHSIP’s standards and products is facilitated by the voluntary participation of staff from all state mental health agencies and by states’ receipt of federal grants that have promoted the development of their data system infrastructures (Smith et al., 2004).
State data infrastructure grants SAMHSA has supported states in applying IT to improve health care for mental conditions through its State Data Infrastructure Grant program. Through this program, states are adopting common data and information technology standards, with a focus on improving information from local providers so that states can report data on the characteristics and performance of their mental health systems. As of 2005, 58 states and territories had received these grants, and the resulting data are being reported to the federal government (SAMHSA, 2005a).
Behavioral Health Data Standards Workgroup (BHDSW) SAMHSA recently convened an ad hoc work group to develop consensus on issues related to data standards for behavioral health. The work group shares its topical expertise on data standards in behavioral health care, apprises relevant groups in the behavioral health care field of activities and trends in national data standards, facilitates and coordinates efforts to influence national data standards, and supports the implementation of data standards in the behavioral health care field.
Uniform Reporting System (URS) for block grant reporting under performance partnership grants SAMHSA’s Center for Mental Health Services (CMHS), in collaboration with state mental health agencies, developed the URS—a set of 23 performance measures for the states derived from administrative data and consumer surveys. Through the State Data Infrastructure Grants, the infrastructure needed to report these performance measures is being built. The 10 national outcome measures (see Chapter 5) defined by SAMHSA as critical performance measures for all agency grantees are a subset of the URS measures.5
EHRs and personal health records CMHS is currently implementing a contract to develop prototypes of an EHR and a personal health record (PHR) for consumers of mental health services. As an initial phase of this work, the contractor is reviewing work already under way in the field in both the public and private sectors. The direction of the EHR work is toward a core set of common data standards and interoperability among ongoing systems. The PHR work will center on consumer-operated websites for negotiating and evaluating local systems of care, as well as on collaboration with consumer and family groups to develop the content for a PHR. The contractor is also examining examples of the local health information infrastructure necessary to operate such systems.6
Substance abuse information system The Services Accountability Improvement System (SAIS) of SAMHSA’s Center for Substance Abuse Treatment (CSAT) is an online, web-based information system used by all of SAMHSA’s substance abuse treatment grantees to input data about their projects that can be used for improved project oversight. In addition, training and technical assistance are provided to grantees on the collection of Government Performance and Results Act (GPRA) data, with SAIS serving as a data
entry point for GPRA data collection. Moreover, SAIS currently serves as a data repository for more than 600 grantees, giving CSAT the capacity to report on populations served; types and locations of activities supported; effectiveness across programs for particular populations; and the characteristics and effectiveness across programs of activities related to national, subpopulation, and geographic area data and trends. The SAIS data also help improve clinical treatment programs and inform decisions on the intensity of monitoring, technical assistance needs, and funding requests. The feedback grantees receive from the system helps them evaluate and enhance their performance. In addition, the system is able to report on employment, involvement in the criminal justice system, and living situation among substance users; social, behavioral, and psychological consequences of drug and alcohol use; and other, related performance data.7
Drug Evaluation Network System (DENS) DENS (Carise et al., 1999), initially funded through the Office of National Drug Control Policy, was designed to serve as a national electronic treatment-information system, providing practical and timely clinical and administrative information on patients entering into substance-use treatment throughout the nation. The system also was designed to serve individual treatment programs by performing an electronic, standardized clinical admission assessment on every client entering treatment at the site. The questions within DENS are from the Addiction Severity Index (ASI), since it has been well tested and validated in many settings, and it is in the public domain and available without charge or restriction. Program staff administer the ASI interview and record the answers given on a lap-top computer. The raw ASI data are automatically transformed into a Joint Commission on Accreditation of Healthcare Organizations (JCAHO)-approved assessment, biopsychosocial narrative, and treatment plan for use by the program counselors (saving about 3 hours of work), and the raw data are automatically transmitted (without personal identifiers) to a server. Program-level summary reports are also available for directors on a quarterly basis. DENS has been in continuous operation at more than 100 experimental sites since 2003 and is now operational in more than 250 other sites. The Department of Veterans Affairs and many state and city systems use DENS.
Nationwide summit on behavioral health information management and the NHII SAMHSA and SATVA held a working summit in September 2005 to define a strategy for behavioral health information management and its role within the NHII. This summit provided an initial opportunity
for leaders of major stakeholder groups and national organizations to discuss such a strategy. The National Coordinator of Health Information Technology delivered the keynote address, thus beginning work on one of the summit’s aims—incorporating behavioral health data and policy concerns into the NHII.
Mental Health Corporations of America This industry trade association for more than 100 leading community behavioral health organizations nationwide is working with SATVA in a joint effort to develop best-practice guidelines for selecting software, contracting with software vendors, and implementing information systems and EHRs.
The Davies Award This award is given annually by the Health Information Management Systems Society to a small number of organizations in recognition of their outstanding efforts to implement EHRs. In 2000, the award was extended to include behavioral health care organizations. Since that time, one such organization has received an honorable mention and another has won the award.
Unique Characteristics of M/SU Services with Implications for the NHII
As discussed in Chapter 2, M/SU health care has several features that distinguish it from general health care. Two of these features have implications for the development of the NHII: the particular importance of privacy concerns (discussed more fully in Chapter 5) and the fact that much care for M/SU conditions is delivered by or through the auspices of entities that are not primarily health care organizations, such as schools and child welfare agencies (also discussed in Chapter 5).
Need to Balance Privacy Concerns with Data Access
The privacy of M/SU treatment data is a sensitive issue, in part because of the stigma and discrimination described in Chapter 3. More broadly, this issue is grounded in people’s common inclination to regard their most personal and intimate experiences, thoughts, and feelings as private and not readily shared outside of trusted relationships. Consequently, and as discussed more fully in Chapter 5, consumer data pertaining to M/SU treatment services are more protected than most general and other specialty health care data. These protections are reflected in federal and state regulations governing the disclosure of information related to health care for mental or substance-use conditions (detailed in Appendix B). While these
regulations help assure consumers of M/SU services that their privacy will be protected, they also can create barriers to accessing data and complicate coordination of care, especially with respect to the use of EHRs and electronic networks. Public policy must balance the sometimes competing priorities of respect for data privacy and facilitation of appropriate data access to support care coordination.
Many privacy regulations address the exchange of paper-based information, although some, such as those contained in HIPAA, address data in electronic formats. However, none of these regulations explicitly address the more recently proposed and innovative components of the NHII, such as:
Regional health information organizations (RHIOs) that will provide electronic networks containing data elements essential to care coordination and accessible by diverse participating health care organizations in a defined geographic region.
PHRs that are consumer controlled, incorporate selected data elements from existing health records, and include data a consumer may choose to add for service providers’ attention.
Work is under way on formulating, developing, and implementing RHIOs (such as the Connecting for Health Initiative discussed above) and PHRs as components of the NHII. The National Committee on Vital and Health Statistics has received testimony on the new types of privacy challenges that will be generated by the NHII and on how these challenges should be addressed (Newman, 2005).
Care Delivered by or Through Non–Health Care Sectors
As discussed in Chapter 5, much M/SU health care is delivered by or through agencies not typically considered part of the health care sector. In particular, the education system delivers the majority of mental health services to children. The welfare and criminal justice systems also are involved in the delivery of much M/SU health care. How are services delivered in schools to be captured in the NHII? Will the NHII capture data only on services that generate a claim or encounter form? Should schools have access to the clinical information on the NHII about their students? What special confidentiality provisions might apply to children served through the welfare system? Can or should the welfare system have access to data on the NHII? These and similar questions need to be addressed in the design of the NHII so it will capture the data needed for effective care coordination while protecting patient privacy.
BUILDING THE CAPACITY OF CLINICIANS TREATING MENTAL AND SUBSTANCE-USE CONDITIONS TO PARTICIPATE IN THE NHII
The utility to the M/SU health care field of the above system-level initiatives to build information infrastructure will ultimately depend upon the capacity of M/SU health care clinicians and organizations to fully utilize the NHII and accompanying technologies as they develop. The less well developed IT infrastructure among M/SU health care clinicians and organizations, the small size of many M/SU clinicians’ practices, the more diverse M/SU workforce, and financial considerations are likely to impede the ability of these providers to participate in the NHII and must be addressed.
Less Use of Information Technology Among M/SU Providers
M/SU health care generally has less well developed information systems compared with general health care (Trabin and Maloney, 2003). SATVA testified to the committee that more complex billing, reimbursement, and regulatory reporting requirements for M/SU health care have required treatment providers (individual clinicians, group practices, community mental health centers, and treatment facilities) to focus the use of IT on billing and other functions unrelated to quality of care (Paton, 2004).
With respect to substance-use treatment providers, telephone interviews conducted in 2003 with a random sample of 175 directors of inpatient/residential, outpatient, and methadone maintenance programs across the nation revealed that approximately 20 percent of programs had no information services of any type, e-mail, or even voice mail for their phone systems. Fifty percent had some form of computerized administrative information system for billing or administrative record keeping, but their information services were typically available only to administrative staff. Thirty percent of the programs—mostly those that were part of a larger hospital or health systems—had seemingly well-developed information systems; however, only 3 of the 175 treatment programs had an integrated clinical information system for use by the majority of their treatment staff (McLellan et al., 2003). Part of the problem is the many M/SU clinicians practicing independently or as part of small group practices, as discussed below. The size of health care provider organizations has been shown to be related to the uptake of IT. As noted earlier, for example, use of EHRs is typically found in larger health care organizations (Brailer and Terasawa, 2003).
Many Mental Health and Substance-Use Clinicians in Solo or Small Practices
Many mental health clinicians report that “individual practice” is either their primary or secondary8 employment setting (Duffy et al., 2004) (see Chapter 7). This has substantial implications for these clinicians’ uptake and use of IT. A 2000–2001 nationally representative telephone survey of physicians involved in direct patient care in the continental United States, for example, found wide variation in IT adoption across physician practices, with practice setting, especially size, being a much more important determinant of adoption than age of provider, practice location (metropolitan or nonmetropolitan area), or type of specialty. In examining IT adoption for five clinical functions—obtaining treatment guidelines, exchanging clinical data with other physicians, accessing patient notes, generating treatment reminders for physicians, and writing prescriptions—the survey found that the vast majority of patients were treated in physician practices lacking significant IT support for patient care. One-quarter of all physicians were in practices with no computer or other form of IT support for any of the five functions, and another quarter had IT support for just one function. Among the five functions examined, physicians were most likely to report that IT was used in their practice to access treatment guidelines (53 percent) (Reed and Grossman, 2004).
The survey further found that nearly 60 percent of physicians in traditional practice settings—solo, small groups with up to 50 physicians, or practices owned by hospitals—reported that their practice used IT for no more than one of the five clinical functions. Highest levels of IT support for patient care were found in staff- and group-model health maintenance organization (HMO) practices, followed by medical school faculty practices and large group practices. IT support varied to a lesser extent among primary care and medical and surgical specialists; some differences remained after controlling for practice setting, location, and physician age.
Psychiatrists as a group had statistically significant lower rates of IT support for patient care compared with all physicians, although psychiatrists practicing in hospitals, in staff/group HMOs, in medical schools, or as part of large (>50) group practices had significantly higher IT support than those in traditional practice settings.9 The authors theorize that the differ-
ences in adoption by practice setting can be explained by larger groups’ and HMOs’ readier access to capital and administrative support staff, the ability to spread acquisition and implementation costs among more physicians, and active physician leadership in IT adoption (Reed and Grossman, 2004).
Data and observations from experts in the use of information systems among managed behavioral health care organizations support this premise. With respect to administrative (as opposed to clinical) IT applications, smaller providers in behavioral health care have lagged behind in use of electronic claims submission (Trabin and Maloney, 2003). Consistent with this observation, the survey of substance-use treatment providers described above found that although approximately 20 percent of surveyed programs had no information services of any type, e-mail, or even voice mail for their phone system, most of those that were part of larger hospital or health systems (approximately 30 percent of the sample) had access to well-developed clinical information systems, e-mail, and Internet services (McLellan et al., 2003).
The Center for Studying Health System Change has suggested that because barriers to IT adoption appear to be greatest for smaller practices, policy incentives for the uptake of IT may need to pay particular attention to those barriers. According to the center, direct grants or loans to acquire IT and strategies to lower the cost of IT may be especially successful approaches for smaller practices; some have advocated a government-sponsored funding mechanism, similar to the Hill-Burton Act for hospitals, to provide capital for IT to physicians and other providers (Reed and Grossman, 2004).
Diverse Types of Health Care Providers
Crossing the Quality Chasm notes that the health care workforce overall is highly variable in terms of IT-related knowledge and experience, and probably also in terms of receptivity to learning or acquiring these new skills (IOM, 2001). This is likely to be equally or more so the case with respect to M/SU clinicians because of their greater variability in education and training (see Chapter 7). Information system executives at six major managed behavioral health organizations and one HMO interviewed in 1999 reported a wide gap between their organization’s interest in and readiness to adopt IT and that of their providers, as well as low acceptance of various technologies among clinical providers. For example, the managed behavioral health organizations and HMO reported that they could not require electronic transmission of claims and other forms because too few providers had the necessary skills and equipment to comply (Trabin and Maloney, 2003).
Varied Reimbursement and Reporting Requirements
Treatment providers, many of whom, as noted, are in solo or small group practices, must respond to varied and complex reimbursement and
reporting requirements. With respect to substance-use treatment providers, for example, the telephone interviews conducted in 2003 with a random sample of 175 directors of inpatient/residential, outpatient, and methadone maintenance programs across the nation found that most of the programs had contracts with multiple managed care organizations and state agencies (e.g., justice, welfare), each requiring different data. Several programs reported that the data requirements of all these agencies required 2–4 hours of data collection per admission, and these administrative data were the only information collected by 30 percent of programs. Programs further indicated that “almost none” of these administrative data were clinically useful or employed in program planning. Staff described their collection as “just paperwork” (McLellan et al., 2003).
Simplifying these requirements will necessitate action across states—by insurers and/or by multiple state agencies. The committee calls attention to the need for a mechanism to examine variations in billing and reporting requirements and for efforts to reduce this variation to the extent possible across states and localities.
Crossing the Quality Chasm (IOM, 2001) notes that deployment of IT requires a significant financial investment. Capital is needed by providers to purchase and install new technology (typically accompanied by temporary disruptions in patient care); specialized training and education are needed as well. With respect to EHRs, in two recent reports (IOM, 2003, 2004) the IOM has recommended that both public- and private-sector purchasers consider linking provider incentives to the acquisition of EHRs that possess the capabilities outlined by the IOM.
The strategic framework developed by the federal government also proposes three strategies for countering financial barriers to the adoption of EHRs: incentivizing the adoption of EHRs, reducing the risk of EHR investment, and supporting EHR diffusion in rural and underserved areas. Potential incentive mechanisms identified in the framework include incorporating support for EHRs in grants or contracts to regions, states, and communities for local IT infrastructure; making available low-interest loans for IT adoption; reimbursing for the use of EHRs; and incorporating EHR use in pay-for-performance projects (Thompson and Brailer, 2004).
INTEGRATING HEALTH CARE FOR MENTAL AND SUBSTANCE-USE CONDITIONS INTO THE NHII
The committee concludes that strong actions are needed to involve M/SU health care organizations, systems of care, and treatment providers quickly and directly in efforts to create the NHII, including initiatives to (1)
develop EHR systems with decision-support capabilities, (2) design a secure platform for the exchange of patient information across health care settings, and (3) develop data standards that will make shared information understandable to all users. To this end, the committee makes the following recommendations.
Recommendation 6-1. To realize the benefits of the emerging National Health Information Infrastructure (NHII) for consumers of M/SU health care services, the secretaries of DHHS and the Department of Veterans Affairs should charge the Office of the National Coordinator of Health Information Technology and the Substance Abuse and Mental Health Services Administration to jointly develop and implement a plan for ensuring that the various components of the emerging NHII—including data and privacy standards, electronic health records, and community and regional health networks—address M/SU health care as fully as general health care. As part of this strategy:
DHHS should create and support a continuing mechanism to engage M/SU health care stakeholders in the public and private sectors in developing consensus-based recommendations for the data elements, standards, and processes needed to address unique aspects of information management related to M/SU health care. These recommendations should be provided to the appropriate standards-setting entities and initiatives working with the Office of the National Coordinator of Health Information Technology.
Federal grants and contracts for the development of components of the NHII should require and use as a criterion for making awards the involvement and inclusion of M/SU health care.
The Substance Abuse and Mental Health Services Administration should increase its work with public and private stakeholders to support the building of information infrastructure components that address M/SU health care and coordinate these information initiatives with the NHII.
Policies and information technology infrastructure should be used to create linkages (consistent with all privacy requirements) among patient records and other data sources pertaining to M/SU services received from health care providers and from education, social, criminal justice, and other agencies.
Recommendation 6-2. Public- and private-sector individuals, including organizational leaders in M/SU health care, should become involved in, and provide for staff involvement in, major national committees and initiatives working to set health care data and information technology
standards to ensure that the unique needs of M/SU health care are designed into these initiatives at their earliest stages.
Recommendation 6-3. National associations of purchasers—such as the National Association of State Mental Health Program Directors, the National Association of State Alcohol and Drug Abuse Directors, the National Association of State Medicaid Directors, the National Association of County Behavioral Health Directors, the American Managed Behavioral Healthcare Association, and the national Blue Cross and Blue Shield Association—should decrease the burden of variable reporting and billing requirements by standardizing requirements at the national, state, and local levels.
Recommendation 6-4. Federal and state governments, public- and private-sector purchasers of M/SU health care, and private foundations should encourage the widespread adoption of electronic health records, computer-based clinical decision-support systems, computerized provider order entry, and other forms of information technology for M/SU care by:
Offering financial incentives to individual M/SU clinicians and organizations for investments in information technology needed to participate fully in the emerging NHII.
Providing capital and other incentives for the development of virtual networks to give individual and small-group providers standard access to software, clinical and population data and health records, and billing and clinical decision-support systems.
Providing financial support for continuing technical assistance, training, and information technology maintenance.
Including in purchasing decisions an assessment of the use of information technology by clinicians and health care organizations for clinical decision support, electronic health records, and other quality improvement applications.
With regard to recommendation 6-1, calling for the implementation of a plan to ensure that the emerging NHII will address health care for mental and substance-use conditions as fully as it does general health care, the committee again (see Chapter 5) calls attention to the diverse confidentiality laws created by states pertaining to the sharing of patient information on mental health care and to federal laws governing the sharing of information on substance-use diagnosis and treatment. These laws have substantial implications for the sharing of electronic information, just as they do for the sharing of information in other media. The committee therefore under-
scores the importance of its recommendations in Chapter 5 regarding the sharing of information on the part of providers of M/SU health care and the importance of eliminating inappropriate legal, regulatory, and administrative barriers to such communications:
Recommendation 5-1. To make collaboration and coordination of patients’ M/SU health care services the norm, providers of the services should establish clinically effective linkages within their own organizations and between providers of mental health and substance-use treatment. The necessary communications and interactions should take place with the patient’s knowledge and consent and be fostered by:
Routine sharing of information on patients’ problems and pharmacologic and nonpharmacologic treatments among and between providers of M/SU treatment….
Recommendation 5-2. To facilitate the delivery of coordinated care by primary care, mental health, and substance-use treatment providers, government agencies, purchasers, health plans, and accreditation organizations should implement policies and incentives to continually increase collaboration among these providers to achieve evidence-based screening and care of their patients with general, mental, and/or substance-use health conditions. The following specific measures should be undertaken to carry out this recommendation: …
Federal and state governments should revise laws, regulations, and administrative practices that create inappropriate barriers to the communication of information between providers of health care for mental and substance-use conditions and between those providers and providers of general care.
The committee also emphasizes that developing an effective mechanism to engage M/SU treatment stakeholders in the public and private sectors in the development of consensus recommendations for the entities and initiatives working with ONCHIT will require an ongoing commitment of resources from DHHS. This commitment will enable an ongoing process whereby the M/SU field can identify informatics needs pertaining to M/SU health care whose inclusion in the evolving IT initiative is important. Some of this work may already be under way. Following up on the President’s New Freedom Commission on Mental Health, in July 2005 SAMHSA announced plans to develop a strategy for implementing innovative technology in the mental health field. SAMHSA plans to convene a consensus development work group, including ONCHIT and other public- and
private-sector experts and stakeholders, to review the current status of telemedicine, information technology, Internet technology, and electronic decision-support tools in health care; examine the current status of implementation of these tools in mental health; and prepare key recommendations for immediate next steps in technology support for mental health services. SAMHSA also plans to explore the creation of a Capital Investment Fund for Technology to work with states in the design and implementation of an EHR and information system (SAMHSA, 2005b). These efforts should ensure the inclusion of both public- and private-sector issues and substance-use as well as mental health care in the ongoing IT initiative.
With respect to the recommendation that public- and private-sector individual and organizational leaders in health care for M/SU conditions become involved in national initiatives to set health care data and information technology standards, the committee notes that several public- and private-sector organizations and initiatives could illuminate key information and technology needs for M/SU health care that should be incorporated in the NHII. The 25 years of experience of the MHSIP and its regional users groups is an invaluable resource that can inform the NHII initiative.
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