Minutes of the February 3, 1999 NCVHS Work Group on National Health Information Infrastructure

02/03/1999

Public Health Service

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS

Work Group on National Health Information Infrastructure

February 3, 1999

Washington, D.C.

- Minutes -


The Work Group on National Health Information Infrastructure of the National Committee on Vital and Health Statistics was convened on February 3, 1999, at the Hubert H. Humphrey Building, Washington, D.C. The meeting was open to the public. Present:

Work Group members:

  • Don E. Detmer, M.D., Chair
  • Jeffrey S. Blair, M.B.A.
  • Daniel Friedman, Ph.D. (Participated by Phone)
  • Richard K. Harding, M.D.
  • Clement Joseph McDonald, M.D.

Other NCVHS Members:

  • Kathleen L. Coltin, M.P.H.
  • Robert M. Gellman, J.D.
  • Barbara Starfield, M.D., M.P.H.

Staff and liaisons:

  • Mary Jo Deering, Ph.D., OPHS
  • J. Michael Fitzmaurice, Ph.D., AHCPR
  • Marjorie S. Greenberg, NCVHS Executive Secretary
  • Sandy Haydock, HCFA
  • Hetty Khan, NCHS
  • Steve Steindel, Ph.D., CDC

Others:

  • William Braithwaite, M.D., Ph.D., ASPE
  • David Kendall, Progressive Policy Institute
  • Rob Kolodner, M.D., Department of Veterans Affairs
  • David Reilly, Consultant, Department of Defense
  • Dr. Laura Reece, Australia
  • Jennifer Zelmer, Canada
  • Dr. David Jones, United Kingdom

ACTIONS

  1. It was suggested that Ray Rogers be invited to address the Work Group.
  2. Dr. Fitzmaurice will make available Ray Rogers's final report.
  3. The Work Group will develop a new outline for the upcoming white paper.

EXECUTIVE SUMMARY

The NCVHS Work Group on National Health Information Infrastructure (NHII) of the National Committee on Vital and Health Statistics was convened on February 3, 1999.

Dr. Deering acknowledged Dr. Detmer's imminent departure as chair; in appreciation of his service, the Work Group presented him with parting gifts.

AGENDA AND GLOSSARY DEVELOPMENT

Dr. Deering presented the details of the Work Group's vision of an NHII and stated plans to issue a revised white paper in about a year. She also described her review of available glossaries in several health fields. Dr. Detmer stressed the importance of international collaboration in the effort to develop an NHII, urging that a work plan be developed and progress be tracked.

?VISA? HEALTH RECORD MODEL

Mr. Kendall discussed the model of an organization like VISA to serve as the trusted repository of health information. He also proposed the concept of an electronic safe deposit box to hold individual's health records, living wills, and insurance data, among other information?a model that the VISA-type organization could implement. He identified as barriers that still must be overcome operationalization of protection and privacy measures, personal information filter for individual health characteristics, and virtual integration of information from diverse sources.

PRESENTATIONS ON AUSTRALIAN, CANADIAN, U.K., AND U.S. DEPARTMENT OF DEFENSE HII MODELS

  • Sandy Haydock, HCFA
  • Hetty Khan, NCHS
  • Steve Steindel, CDC
  • Laura Reece, Australia
  • Jennifer Zelmer, Canada
  • Dr. Jones, United Kingdom

Staff presented summaries of the HII efforts of Australia, Canada, and the United Kingdom, and representatives from those countries refined their understandings of the process in their respective countries. Ms. Haydock described briefly several major features of the Australian information model and enumerated its benefits, and then listed the data types collected. Among the key concepts that have emerged from Australia's experience include: (1) securing the participation of stakeholders throughout the industry and the community, (2) considering a broader definition of health care information, and (3) presenting and promoting the gathered information in a clear, intuitive, understandable way to be useful to the target audience.

Ms. Khan presented highlights of the Canadian model, noting the similarities with and differences from the American system. Differences include the public-sector approach of the Canadians, contrasted with the private-sector initiatives of the U.S. Similarities are found in the emphasis on the individual, health monitoring, accountability, improved access to special populations, and the risks of privacy, confidentiality, and security. Ms. Khan also described features of the national mandates, for example, development of common definitions and core indicators and development of best practices as operating standards.

Dr. Steindel summarized Information on Health, an overview of the U.K. system. The hallmarks of this system are local implementation of three components: treatment and care, electronic health records (EHR) and patient records, and social care records. Objectives include establishing a lifelong EHR for every person and 24-hour access to patient records system for clinicians, supporting integrated care through system-wide standards, and developing an HII that provides for privacy, confidentiality, and security. The document stresses development of a mechanism to implement the system: a national health information partnership that defines the stakeholders and mandates formation of a National Health Information Authority.

In discussion with staff, Dr. Jones pointed out the similarity between the U.K.'s EHR and the VISA-type organization described by Mr. Kendall, and noted that subjects in the U.K. place their trust in the national health system. Dr. Reece suggested strategies for the U.S. developers to adopt as next steps, including improving data quality and data standards, careful documentation of the discussion process, viewing the process from many angles, and conducting continuous improvement cycles. Ms. Zelmer enumerated many similarities in processes between Canada and the U.S., for example, broad consultations, overarching strategies, concern with privacy and confidentiality, and dissemination of health information to consumers. Dr. Fitzmaurice commented on the lack of government coordination of the private- sector efforts in the U.S., Canada and the U.K. have formally compared their models with the HL7 model.

NEXT STEPS IN ANALYSIS OF COUNTRY/DOD MODELS

Dr. Deering stated that next steps will be to determine the commonalities among the models studied, to develop by June a new outline for the white paper, and to schedule a meeting with the Assistant Secretary for Management and Budget. Focus on the matrix was tabled, and it was announced that several representatives from the U.K.'s NHS will visit in late February to discuss the National Electronic Library for Health.

DETAILED MEETING SUMMARY

February 3, 1999

INTRODUCTIONS, JANUARY MEETING RECAP, and TRIBUTE TO DR. DETMER

Dr. Detmer chaired the meeting. As is customary, all present were asked to introduce themselves. Dr. Detmer noted that at the January meeting, the Work Group continued its focus on the work statement. Dr. Deering pointed out that the statement is available on the Web site, <http://aspe.hhs.gov/ncvhs/>.

Dr. Deering acknowledged Dr. Detmer's imminent departure as chair, and the Work Group expressed appreciation for his contributions.

AGENDA AND GLOSSARY DEVELOPMENT: Dr. Deering (OPHS)

The Work Group discussed a vision for a national health information infrastructure (NHII). The elements, as defined in the Work Group's vision statement, include a set of standards, technologies, and applications to handle clinical care, public health, and consumer and patient information. Tasks include population-based data; consumer health records, including personal, patient, and population-based records; knowledge, management, and decision support; and telemedicine. Cross-cutting purposes include standards, research, education and development, universal access to health information resources, and international collaboration. The Work Group plans to prepare and issue a revised white paper in about a year.

Dr. Detmer emphasized the importance of international collaboration, continuing dialogue with the participant nations in the discussion, and developing deliverables on standards and models. He stressed the importance of the EMLS activity at the National Library of Medicine and at other important libraries worldwide. He urged not only that a work plan be developed, but that progress be tracked.

Dr. Deering described her review of glossaries in the fields of health infomatics, telemedicine, and telehealth, in an effort to create a glossary that will accompany the revised white paper.

VISA HEALTH RECORD MODEL: David Kendall (Progressive Policy Institute)

Mr. Kendall praised the NCVHS draft vision and offered several conditions that must be present for funding of a more robust health information network: secure records that protect privacy, information of benefit to the patient, and collaborations for broad use (interoperability, open architecture system, nonproprietary).

While no trusted source currently exists that might operate such a system, one could be created. Mr. Kendall gave, as an example, VISA Corporation, a unique institution that has ?gained the trust of all the banks that participate in offering VISA cards to the merchants and consumers who use it through? a ?voluntary, private effort.? VISA blends cooperation and competition, Mr. Kendall asserted, in a way accomplished by few organizations in the United States.

The efforts of VISA's founder to bring together diverse stakeholders and to thrash out solutions to issues offer a new model for the health care industry. Mr. Kendall suggested for the glossary a new term, ?chaord,? an organization that combines seamlessly the effective tension between chaos and order, enabling people's creative spirits to emerge. The National Health Foundation and the Center for Advancement of Health are spearheading an effort to start a dialogue among such organizations as the American Hospital Association, American Association of Health Plans, and American College of Preventive Medicine to define a common vision.

Mr. Kendall suggested the concept of an electronic safe deposit box, a repository for information such as one's living will, insurance card, and health records, with both public and private keys for access. A VISA-type organization could either foster development or create such a system. The need exists for an organization that can agree, on a ?rapid and revolving basis,? on standards on operational questions.

Mr. Kendall acknowledged the system established jointly by the Department of Veterans Affairs (VA), Bureau of Indian Health Services (BIA), and the Department of Defense (DOD), and stated that a meeting has been held to evaluate the potential to combine these efforts.

Among the ?burning platforms? Mr. Kendall suggested as catalysts to implement the system are operationalization of the protection of privacy and confidential use of health information, personal information filter for individual health characteristics, and virtual integration of information from diverse sources.

Discussion

Dr. Kolodner acknowledged the possibility of converging the VA/BIA/DOD efforts with those of Mr. Kendall's group, but cautioned about striving for consensus too early on both the trust and technological issues. Dr. Kolodner asserted that the current absence of a trusted organization has been an obstacle to progress. In health care, such an organization must be open to a broad spectrum of health-related entities, including the consumer.

When asked about the timing of achieving trust, Mr. Kendall pointed out that the technology is in place to accomplish most of what has been discussed, but the lack of interoperability is a barrier. The challenge is how to develop motivation and momentum to cooperate. Dr. Kolodner concurred, stating that the key is to identify inclusively a common purpose and principles, and to develop trust.

Mr. Blair expressed his excitement about the VISA model, but questioned its applicability beyond the personal record. Mr. Kendall explained that the model also could be the basis for better claims processing and for consumers putting into place their living wills. He suggested that proprietary data systems would benefit by a common way to link their information. Dr. Kolodner asserted that the central piece will be the individual electronic health record, and he stressed the importance of designing the record to permit some zone of information to be available without identifiers for public health purposes. Mr. Kendall concurred and pointed out that a health risk appraisal system already has been developed by Health Query in California to create a public database, without identifiers, for comparison of personal health information with claims processing information and other information systems.

PRESENTATIONS ON AUSTRALIAN, CANADIAN, U.K., AND U.S. DEPARTMENT OF DEFENSE HII MODELS

Dr. Deering asked the country representatives in attendance to help refine the presentations on their respective countries' HII models.

Australia: Sandy Haydock (HCFA)

Ms. Haydock explained that her analysis of Australia's National Health Information Model emphasized those elements that she deemed relevant to the Work Group's focus, for example, inclusion of potentially under-represented groups; increasing cost-effectiveness of data dissemination and interpretation, in addition to cost-effectiveness of data collection and effectiveness and cost-effectiveness of health care delivery; obtaining outcomes and effectiveness information; and conducting surveys for population data.

In the National Health Information Agreement, the commonwealth, states, and territories all agree on definitions of standards, rules, and guidelines to collect, access, interpret, and publish data. Dr. Reece clarified that the federal government works with the existing health authority in each state government. The Australian model was designed to provide access to better and more timely information for health care professionals, community groups, government, and nongovernment organizations. Dr. Reece clarified that individual access is also intended. Ms. Haydock identified as a benefit consensus on the appropriateness of the data collected.

She briefly described several features of the Australian information model: high-level design, to be flexible and usable by many groups; person centric, congruent with the way the Work Group has envisioned an HII model; top-down information modeling approach; framework for lower-level information modeling and information system development; and conceptual basis for the national data dictionary.

Dr. Reece noted that the National Health Information Model is an instantiation of the ISO meta-data model, based on the ISO 11179 meta-data standard. That standard is going forward based on the Australian implementation of the earlier standard.

Ms. Haydock enumerated the benefits of an information model: It helps to focus thinking, provides a common language, and offers flexibility for individuals and groups to see themselves within the model.

Diverse workshops in Australia formulated decisions on the kinds of data to gather, based on the perceptions of well-being and illness. These data types include external influences, such as a chemical plant leak; community health; mental health, including target groups or ranges of service types; institutional care, including provider roles and organization, program purchasing and funding, and account processes and resources; and access, equity, and awareness, including perceptions of consumers on changes in service practices, outcomes, and best practices.

Some key concepts that have emerged from Australia's experience include: (1) securing the participation of stakeholders throughout the industry and the community, (2) considering a broader definition of health care information?not just the patient's clinical record, and (3) presenting and promoting the gathered information in a clear, intuitive, understandable way to be useful to the target audience. More information is available on the Internet at <www.aihw.gov.au>.

Canada: Hetty Khan (NCHS)

Ms. Khan presented highlights of the Canadian model, for which three national agencies have collaborated as an advisory board to form the infrastructure. The Canadian system focuses strongly on national mandates, whereas the U.S. system is driven by private- sector initiatives. Canada focuses on the types of health information to be generated and how to provide that information. Both the Canadian and the U.S. system stress the individual in terms of access to the health record, individual empowerment, and the ability to control information and health care by that information. Other features include monitoring health, accountability, and improved access to special populations?an approach that also parallels the U.S. system. Risks in both systems include privacy, confidentiality, and security. In the telemedicine arena, the Canadian model is user oriented to ensure access to the information.

Several items relate to the national mandates: development of common definitions and core-held indicators; priority development of standards (the Canadians focus on HL7); development of benchmarks for policy management and service delivery; identification of the determinants of health, information inputs, data elements, collection methodologies, standardized formats for data collection analysis, dissemination, and audit; development of best practices as operating standards; and development and dissemination of standard templates for indicators of health. Ms. Khan also mentioned development of national principles, standards, and protocols to address privacy and confidentiality; provision of a catalog of reports, data, products, and services; elimination of multiple parallel tracks of access or dissemination; increasing visibility and availability of services to consumers; systems for training, data collection, access, analysis, and interpretation to the providers of health care; provision of decision tools, support, and training; provision of support and advisory service; leadership in goal setting; promotion of greater use of electronic channels; and improvement in coordination between the national agencies and provincial jurisdictions.

United Kingdom: Steve Steindel (CDC)

Mr. Steindel presented a summary of Information on Health, an overview of the United Kingdom's (U.K.) national HII. The U.K. system stresses local implementation of three components: treatment and care, employee health records (EHR) and patient records, and social care records. The information can provide knowledge for the public, patients, health care professionals, and managers.

The objectives include establishing a lifelong EHR for every person and round-the- clock access to patient records by all National Health Service (NHS) clinicians. Public access is an integral part of the strategy, including development of an electronic library for access by the public. The electronic patient record, defined at six levels of information, will be built from the EHR?an aggregation of patient information for a lifetime based on encounter data. Other objectives are supporting integrated care through NHS-wide standards and developing an HII that provides for privacy, confidentiality, and security.

Health care improvement and effective management are important concerns in the U.K. system, including improvement of data quality to permit decision making and assessment of performance and gaps in health care. The U.K. construct of telemedicine has its U.S. equivalent in telehealth. Information on Health stresses development of a mechanism to implement the system: a national health information partnership that defines the stakeholders and mandates formation of a National Health Information Authority. This authority would bring stakeholders together to discuss infrastructure implementation, which would require redefining the procurement process. The document defines local roles and presents a time line with milestones.

Discussion

The foreign representatives and members of the Work Group expressed their thoughts on the foregoing discussion. Dr. Jones of the U.K. pointed out the similarity between the U.K.'s EHR and the VISA-type organization, and that primary care specialists in the U.K. are sufficiently trusted by the public to hold the knowledge. In addition, in the U.K., the public can consult by telephone with a nurse or specialist. The future may hold other services provided through this type of telephone service.

Dr. Reece of Australia asserted that improving data quality and data standards is an easy target to identify and approach, without jeopardizing overall policy. She also suggested that involvement of stakeholders at lower-level discussions is critical to success. The discussion process was documented carefully in Australia, and its lessons learned were important; much has been published in data management circles rather than health. Viewing the process from many angles is important, including health information technology, data management, and health provision. She also noted that it is important to carry out a plan that has been formulated, and then to review, evaluate, and change it, and close the loop and feed it back for continuous improvement.

Ms. Zelmer of Canada pointed to the similarities in processes among the countries: broad consultations, overarching strategies, standards as building blocks, more formal models, concern with privacy and confidentiality, electronic health records, dissemination of health information to consumers, health information as a support to development of health policy and management of the health system. She noted that the G8 countries have consulted widely on enabling mechanisms.

Dr. Fitzmaurice described Ray Rogers's efforts with G8 countries on the mechanisms and offered to make available the final document. Dr. Fitzmaurice suggested that Rogers be invited to speak with NCVHS.

Dr. Fitzmaurice also commented that in the U.S., contrary to the case in other countries, government funding and ?glue? are less prevalent in an environment of private- sector initiatives. Many tools are available, but national leadership is currently lacking to pull the tools together, to eliminate unnecessary duplication, and to link with other countries. Ms. Zelmer and Dr. Jones both remarked that their countries eventually established national ?umbrellas? to coordinate its multiple focal points.

Dr. Lumpkin discussed the current availability of approaches to merge the personal and the public health orientations. Dr. Jones stated that the U.K. system has the ability to pass patients' records through both a populations filter and a geographical filter. Ms. Frawley mentioned the issue of data ownership, noting that the U.S. is not alone in its struggle to come to consensus.

Dr. Jones noted that work already has been done on many problems identified at this meeting, for example on security and confidentiality, but not ownership.

Ms. Zelmer stated that the institution that conducted the highly successful Canadian data collection is well respected, and the ground rules for data usage were well defined. Ms. Greenberg and Dr. Fitzmaurice noted the success of the National Health Interview Survey and the Agency for Health Care Policy and Research survey, respectively, although the situations are not parallel with Canada's. Dr. McDonald referred to the complications and challenges of eliciting data.

Mr. Reilly queried the representatives about the methodologies they use. Dr. Jones and Ms. Zelmer have formally compared their models with the HL7.

NEXT STEPS IN ANALYSIS OF COUNTRY/DOD MODELS

Dr. Detmer suggested that the next step will be to organize the concepts raised in this discussion. Dr. Deering stated that one activity will be to determine the commonalities among the models. Another will be to develop by the full Committee's June meeting a new outline for the upcoming white paper. A long-postponed meeting with the Assistant Secretary for Management and Budget will be scheduled for the near future. Focus on the matrix will be tabled again. Several representatives from the NHS plan to visit February 22-24 to discuss the National Electronic Library for Health, see live telemedicine demonstrations, and engage in other activities.

Dr. Lumpkin emphasized the importance of work on this model in the future of the National Committee. Dr. Detmer noted the receptivity at the February 2 meeting on the computer-based record to the concept paper. He also underlined the urgency for the Work Group to complete its mandate successfully.

Dr. Detmer adjourned the meeting.


I hereby certify that, to the best of my knowledge,

the foregoing summary of minutes is accurate and complete.

/s/ John R. Lumpkin 8/23/99

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Chair Date