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Outreach and Review of Existing Efforts

TAB B -- Inter-departmental Activities -- Outreach and Review of Existing Efforts

1. Outreach

Health data standards issues present a special problem for inter-agency coordination, due to the multiple, fragmented efforts already underway in this area. To determine how best to structure an interagency effort that could bring policy cohesion, rather than be yet another group addressing the same issues, we undertook an aggressive outreach program, meeting and speaking with staff and senior officials in the agencies listed in the Vice President's memo (and others), and reviewed existing interagency efforts, to determine their strengths and weaknesses.


Our main avenue for staff input from other agencies was the Health Information and Applications Working Group (HIAWG) . All non-HHS members of HIAWG were invited to meet with HHS representatives. Multiple meetings were held, both to accommodate schedules and so that the meetings would be small to accommodate active and informal discussion. HIAWG members were asked how the HHS effort could be most productive and how it should be organized. They were asked to discuss the role of the HIAWG on health data standards, both currently and after the HHS effort got underway. They were also asked to identify additional persons in their agencies with whom we should speak. All persons identified by the HIAWG discussants were contacted and asked the same questions.

In addition to staff discussions, Secretary Shalala sent a letter to the heads of the other Cabinet agencies listed in the Vice President's memo, informing them of, and seeking their assistance in responding to, the Vice President's charge. The Secretary of each agency was asked to identify a senior official to be the contact person regarding these issues. Responses varied; few Departments were able to appoint a single contact person. For some Departments, we used that Department's staff and OMB staff to identify the appropriate senior officials. Eventually, at least one (typically multiple) senior personnel in each Department was contacted and interviewed.


Few persons had a clear vision or strong opinion regarding how HHS should proceed. The few who did, offered contradictory suggestions. For example, some persons indicated a need for a small, high-level core of people to set goals, review what the many groups are doing in health data standards, and effect the implementation of final decisions. Others strongly admonished us not to create such a group. Staff discussions were most useful in helping us understand how HIAWG members view their role and the role of other groups in this area, and in identifying additional persons in their agencies who are working on these issues. However, overall, these discussions did not point in any clear direction.


2. Review of Existing Efforts

Several existing models for interagency effort were explored. These include the Federal Interagency Data Work Group (FIDWG) established by the Maternal and Child Health Bureau, the HIAWG (discussed above), the National Science and Technology Council (NSTC) , and the Federal EDI Standards Management Committee (FESMCC). Staff involved in these efforts were interviewed.

The problem cited most often with respect to inter-agency working groups was connecting the group's recommendations with agency implementation. Typically, the group's decisions have no official status in any agency to encourage implementation. Other issues cited include:

  • Participants are often quite knowledgeable, but are not sufficiently connected to the official policy makers in their agencies.
  • Difficulty in reaching consensus when confronted with real or perceived conflicts in agency objectives.
  • Lack of a high level mandate for collaboration.
  • These groups tend to be too large for effective discussion and decision making.
  • Lack of support (staff time and travel funds) to engage fully in a complex and time consuming endeavor.

Under the Vice President's National Information Infrastructure (NII), the Information Infrastructure Task Force (IITF) Committee on Applications and Technology (CAT) established the Health Information and Applications Working Group (HIAWG) with representation from several health related agencies. The HIAWG is chaired by ARPA and has an open membership. That is, the members are voluntary and are not, in general, assigned by their agencies as formal representatives. The HIAWG meets monthly, typically with about 15-20 of its more than 50 members present to exchange information about current events and receive updates from its subgroups. The HIAWG has established subgroups on Consumer Health Information, Telemedicine, Emergency Preparedness, Managed Care, and Standards. Some of these subgroups have already prepared white papers discussing their issues, others are still working on them. The Standards Subgroup is currently drafting a white paper describing the health information standards setting process.

The HIAWG members regard the HIAWG more as an idea-generating body, like a 'think tank', and do not expect to make decisions that need to be implemented by the agencies. If the ideas that are generated are of interest to an agency, they are 'marketed' by each agency's representatives on the HIAWG. The HIAWG has no mechanism for implementing decisions and no agency has taken up direct input from HIAWG for implementation. The chair of the HIAWG felt that it could have a role as the source of interested and knowledgeable staffing for work on these issues within the framework of a structure which better provides for implementation.

In order to bring together federal agencies that serve children and families and that have data and/or analytic responsibilities particularly with regard to state data collection, reporting, and analysis, the Maternal and Child Health Bureau (MCHB) established the Federal Interagency Data Work Group (FIDWG) in 1990. The work group's goal is to identify and address potential areas for improved data activities and coordination at the federal level, and to take specific action to facilitate such collaboration, comparability, coordination, and simplification. Work group members represent a cross- section of federal agencies and Cabinet Departments that either serve, provide funding for, or collect information about mothers, infants, children, and/or adolescents. MCHB sets the agenda and chairs the quarterly meetings at which 15 - 20 members attend. The members are typically mid-level staff who understand and use the data and know its problems.

The National Science and Technology Council (NSTC) is a cabinet-level group established to coordinate science, space, and technology policies throughout the federal government. It is chaired by the President and includes the Secretaries and Directors of those government organizations with a vested interest in these areas. The NSTC has established standing coordinating committees to prepare coordinated strategies and budget recommendations in research and development areas and these committees use ad hoc working groups as needed to review and coordinate specific policies and initiatives.

Under the authority of Public Law 89-306, the National Institute of Standards and Technology (NIST) has proposed a revision of its Federal Information Processing Standard (FIPS) 161, an EDI regulation which, among other things, establishes a Federal EDI Standards Management Coordinating Committee (FESMCC). The FESMCC will provide government-wide support and coordination of the development and maintenance of implementation conventions (IC) for EDI applications used by federal agencies. The goal of the FESMCC is to promote consistency among EDI applications across agencies and coordinated Government representation at standards bodies. The FESMCC will establish interagency functional work groups for specific areas to provide a focal point for development and maintenance of ICs and standards. Chairs of Functional Work Groups are also voting members of FESMCC and liaison to national and international standards body meetings. Additional, non-voting representation is allowed as required or desired. The FESMCC has been in operation since January (although not yet ratified by adoption of the revision of FIPS 161) with an elected Chair from GSA and Functional Work Groups in the subject areas of finance and procurement. At present there is no FESMCC work group on health EDI standards.