The National Committee on Vital and Health Statistics was convened on Thursday and Friday, November 12 and 13, in the Hubert H. Humphrey Building in Washington, D.C. The meeting was open to the public. Present:
The Committee met in plenary sessions over two days, also spending some of that time in break-out sessions. The meeting began with briefings by Department representatives. Mr. Fanning reported on new developments in the privacy area, notably efforts by the Commerce Department and HHS to keep data flowing between the U.S. and the E.U. Dr. Braithwaite reported on the status of NPRMs. None of the final rules will go into effect until after Year 2000 conversions are completed.
Dr. Peggy Hamburg, Co-Chair of the Data Council, reported on its recent activities, stressing race and ethnicity data collection, HIPAA implementation, and long-range planning for the Department. The Committee called attention to its recommendations on using SLAITS to monitor the Children's Health Insurance Program and identify best practices.
Diane Wagener of NCHS reviewed the discussions of data issues at the first three of five regional meetings on Healthy People 2010. Much of the discussions have concerned how the data produced on national objectives can also be useful at the State and local level. Another major set of concerns stems from impending changes in age adjustment standards, ICD coding, and race/ethnicity classifications.
Ms. Wagener circulated tables analyzing the 2010 objectives. Many of the 531 objectives in the current volume are compound, making a total of 1,031 separate statistical measures. Some 40 percent of these are developmental objectives with no baseline, and NCHS hopes to work with NCVHS to identify ways to fill these gaps.
Dr. Carter-Pokras (OMH) and Mark Smolinski (ODPHP) reported on the data sessions they attended at the first three Healthy People 2010 regional meetings, elaborating on the same issues identified by Ms. Wagener. Mr. Smolinski also summarized trends in the public comments. They reported some mixed views about the wisdom of having single targets, aimed at eliminating disparities. Most supported it, but some are concerned that it will be demoralizing because it is unattainable within ten years.
Ms. Wagener also briefly discussed plans for volume 3 and reviewed a timetable for getting drafts of sections of Volume 3 to the Committee in the course of 1999.
The Committee approved a modified version of a letter brought forward by Dr. Starfield for the Subcommittee on Populations, with five recommendations on Healthy People 2010: 1) race/ethnicity and income targets for all objectives and the use of OMB categories; 2) the addition of a separate chapter on information systems and data needs; 3) indication of the most likely primary source of data for each objective; 4) the use of geocoding wherever possible, commensurate with privacy protection; and 5) more current framing of the objectives for primary care.
Jack Anderson (NCHS) and Tony D'Angelo (IHS) reported on two Department projects on racial and ethnic data, the subgroup on data needs for eliminating disparities and the Working Group on Racial and Ethnic Data. The mandate of the first is evident in its name; the other is charged with developing a long-term plan for improving the collection and use of racial and ethnic data. The two are coordinating their work, which links to Healthy People 2010. A framework is six areas selected by the Department as a focus over the next decade: infant mortality, cancer screening, cardiovascular disease, complications due to diabetes, HIV/AIDS, and immunizations. There are HHS work groups for each, plus a data work group to figure out how to get data to monitor these efforts. Another part of the initiative involves demonstrations in communities, the number to be determined by the funding. The two groups will produce a joint report by spring, 1999.
Most of the discussion with the Committee focused on the community demonstration project, with the group agreeing that the project should focus on a few model communities to show what works.
Jane Bortnik Griffith of the National Academy of Sciences described the work of a new National Research Council Committee on Enhancing the Internet for Medical and Biomedical Applications: Technical Requirements and Implementation Strategies. The Committee combines professionals from the fields of health care and information technology. The general purpose of this study is to identify the technical needs of health care and biomedical communities with respect to the Internet, to see what can be done to facilitate more routine use for the medical field. Ensuring that the next generation Internet (NGI) will support health care requires identification of specific applications and their technical requirements. Updates of this project are available on the National Academy of Sciences' Web site (www.NAS.edu), under "Current Projects."
In the discussion period, NCVHS members raised questions about privacy protections, equity and access, and outreach to the health business community. Dr. Griffith said the NRC committee welcomes suggestions about people and organizations they should invite to their meetings. She assured the Committee that the NRC committee is interested in the public health applications of the NGI.
Bud Nicola, M.D., of CDC said that the project to measure information systems in the pubic health infrastructure aims to document system inadequacies and assess its strength, to answer important policy questions, and to support current initiatives. It is being developed based on recommendations from a study by the Lewin Group. Many partners will be involved in this enterprise. Carrying it out will begin with a system of sentinel sites, followed by public health agency registration, national surveys, and case studies.
NCVHS members spoke in support of the project and its goals. Several discussed definitional issues, and Dr. Nicola stressed that the definitions will become clearer as the project progresses. It was noted that this project is moving in the same direction as notions for the national health information infrastructure. The inclusion of public health concerns in the insular areas was praised, and it was suggested that one of these areas be a sentinel site. It was noted that constraints and value-added at the State level need to be factored into this project, now or in the next stage. In addition, States may wish to buy into and expand this measurement project, because they are interested in the same information on the infrastructure.
Ann Page of HCFA reported that the agency began this initiative in 1996 to develop standards that Medicaid and Medicare could require of managed care plans, to promote higher quality. A draft set of standards was released in the Federal Register in January 1998, generating extensive public comment. The final standards were released in September, updating Medicaid quality standards (QARI). One aim of the revision was consistency across Medicare and Medicaid standards. The standards also will serve as a tool for value-based purchasing. They are advisory to the States, not requirements, but traditionally the States have appreciated such guidance and it is expected that most will adopt or adapt them. There are incentives to use them in that they mirror the BBA regulation, so using them constitutes compliance with the BBA rule.
The standards address four domains of health plan activity: quality assessment and performance improvement, enrollee rights, health services management, and delegation. Ms. Page briefly discussed each one. She said QISMC is just part of the States' quality strategy, along with annual review by an external quality review organization. The BBA requires states to figure out how to use the various quality assessment tools to develop an assessment and performance improvement strategy for its contracts. QISMC provides a tool for doing so. Ms. Page described plans for technical assistance to States in implementing the standards.
Several NCVHS members expressed support for this project. Dr. Iezzoni added a caveat, based on the findings of the Subcommittee on Populations from site visits, that many providers may lack the capacity to carry out the project. She urged HCFA to do its own monitoring in the community to see where technical support and resources are needed to achieve the program's goals.
Dr. Nicole Lurie, Principal Deputy Assistant Secretary for Health, reported that the Office of Public Health has taken as its focus the five priority areas identified by Dr. Satcher: a healthy start for every child, mental health, eliminating disparities attributable to race and ethnicity, global health, and creating a climate that encourages healthy behaviors. One of her major responsibilities is the effort to eliminate disparities, with the Healthy People process as a major mechanism.
She enumerated several of the areas in which better data are needed in order to achieve key public health goals -- notably the elimination of racial and ethnic health disparities and the use of leading health indicators. Program evaluation, such as on CHIP, is another key area, as is assessing cultural competence. She hopes to be in dialogue with the National Committee about these and other endeavors. Dr. Starfield noted the Committee's interest, as well, in SES disparities. Dr. Iezzoni urged a serious look at the ICIDH, at least as a basis for a functional status measure. The Data Council will brief the Committee on its research in the latter area.
The Committee approved a revised charge for the Subcommittee on Populations.
Dr. Friedman described the three-part activities of the Work Group on Health Statistics for the 21st Century. Members commented on the convergence between conceptualizations of health statistics and of the national health information infrastructure.
Ms. Coltin reported that the Work Group on Quality will primarily work on subsets of projects of the Subcommittee on Populations, concerning Medicaid managed care and “post- acute” care.
Mr. Blair reported that the Work Group on Computer-Based Patient Records will host hearings on December 8-9 to solicit feedback from various groups on whether its focus for the work plan for the next 18 months is on target.
Dr. Lumpkin reported that the Subcommittee on Standards and Security was briefed the previous day on the claims attachment standards. The Subcommittee has asked the HHS Implementation Team to assess whether specialists such as emergency physicians and ambulance companies have had enough input into the SDO process. If not, the Subcommittee may hold a hearing.
Ms. Fyffe reported that the Subcommittee on Privacy and Confidentiality heard a presentation from the National Association of Insurance Commissioners about its Health Information Privacy Model Act. The Subcommittee is considering offering formal comment on the model from NCVHS. The group also planned its February 2 meeting, which will include panels on the use of identifiable health information for pharmaceutical marketing and by employers.
Dr. Friedman reported that National Health Information Infrastructure Work Group presented the Committee's concept paper to the Data Council in October. Its next projects are to clarify definitions, assess the status of each area of the NHII, and compile information on what other countries are doing.
Ms. Greenberg reported that this November 2-3 meeting achieved its educational and organizing objectives. It was attended by 83 people from the public health and health services world, including six NCVHS members (who gave the event high marks). The educational goal was to help people understand HIPAA and its implications for their activities. The other goals were to identify data needs and expand representation in content committees and SDOs to include these communities and perspectives. The workshop participants recommended a consortium be developed to identify needs and organize representation to the SDOs for input in the decisions still to be made and future standards. The group discussed how the health services research community might be induced to participate more fully. The background papers prepared for this event, plus final recommendations and reports, will be posted on the Lewin Web site (www.lewin.com/hipaa).
The Committee briefly discussed plans for its February meeting.
Dr. John Lumpkin chaired the meeting in place of Dr. Detmer, who was out of the country. As is customary, all present were asked to introduce themselves.
Congress ended its session without enacting health record confidentiality legislation. Senator Bennett introduced his bill, S-2609, at the end of the session. The European Union (EU) Data Protection Directive went into effect on October 25, directing that data may not flow to countries outside the EU to countries lacking adequate protection for personal information. The U.S. Commerce Department is working to keep the data flowing and has published on its Website "Safe Harbor Principles" which companies can sign, thus creating a presumption of adequate protection. DHHS is working closely with Commerce to ensure that these principles do not interfere with the data flow necessary for public health and other health transactions.
The comment period has closed for four NPRMs, and the Department is organizing and summarizing the comments so the issues can be debated and decisions can be made on final rules. The comments are on the Administrative Simplification Web Site. The NPRM on the Payer ID is in clearance. The Department is still studying the implications of the Congressional prohibition against using HHS funding to issue a final rule on the unique health identifier for individuals until Congress approves the standard. Asked about the timing of release of final rules, Dr. Braithwaite affirmed that nothing would go into effect until well after Y2K conversions are completed.
Ms. Wagener's Division of Health Promotion Statistics organizes the monitoring data for Healthy People 2000 and 2010 and gives statistical advice to the Office of Disease Prevention and Health Promotion (ODPHP).
Ms. Wagener briefly reviewed the discussions of data issues at the first three of five regional meetings on Healthy People 2010. A great deal of local interest was expressed. States and locals want to understand how the calculations are done and to be able to produce their own data. States use the objectives for planning and to motivate and initiate local activities; thus much of the discussion in these meetings concerned use of the data at the local level. Very few of the 531 Healthy People 2010 objectives can be obtained at the local level; moreover, there is no consensus on what kind of data are needed locally. She noted the problems and controversies pertaining to both risk behavior and program evaluation statistics. The upshot is that it is thought best to provide States and locals with a panoply of objectives to choose from.
Concern was also expressed at the regional meetings about the impact of impending changes in age-adjustment standards, ICD coding, and race/ethnicity classifications. Commenters stressed the need for advance communication to the public about the reasons for the changes and the fact that following trends will still be possible.
Ms. Wagener then circulated tables analyzing the 2010 objectives. Many of the 531 objectives in the current volume are compound, making a total of 1,031 separate statistical measures. Some 40 percent currently have no data. NCHS hopes to work with NCVHS to identify ways to fill these data gaps, and the Department welcomes the Committee's active involvement. It is now organizing work groups to identify patterns in the types of data missing. This is a cross-Departmental initiative.
About 40 percent of the objectives are carried over from Healthy People 2000. Of the measurable objectives, 40 percent identify race as a breakout; 17 percent identify socioeconomic status; and 5 percent identify people with disabilities as an important breakout group. About 190 different data sources are used. Ninety-four objectives identify no baseline data or data system. Both the gaps and the breadth of data collection are problems. There is considerable dependence on supplemental data sources, so the Department must find a way to sponsor the supplements; no single federal agency reflects all the data needs. Special data collections also will be necessary.
The objectives and discussion of each focus area are contained in Volume 2. Volume 1 is a brief policy document. Volume 3 will contain operational definitions and information on the major data systems, so that statistical staff can reproduce the objectives and statistics and monitor their particular populations.
Dr. Lumpkin deferred discussion of this presentation until later in the meeting, and welcomed Dr. Peggy Hamburg, Co-Chair of the HHS Data Council.
Dr. Hamburg stated her appreciation for the "very critical" joint activities of NCVHS and the Data Council. The Council recently celebrated its third anniversary. It is successfully serving the mission the Secretary defined for it, to coordinate and advise on issues of data and privacy. Dr. Hamburg reviewed the Council's six priority areas, noting that the Department is getting into international issues in significant ways and that implementing HIPAA requirements is a high priority that takes much of the Data Council's time and attention. Other important activities include updating the HHS Directory of Data Systems, which will include information on how to access and use data sources; survey integration, motivated in part by the Department's need to communicate data consistently; and efforts around race and ethnicity- related data collection.
The Data Council also has developed a five-year plan to address data needs, coordinate activities and identify resource needs. The Co-Chairs will present this long-term agenda to the Secretary to elicit her input about priorities. The aim is to ensure that the Data Council is institutionalized as part of the Department and outlives the current administration.
Asked about survey integration, Dr. Hamburg said the Data Council's work focuses on Federal surveys only; but integration with externally driven surveys, many of which have HHS funding, also is important. This is especially true with regard to welfare reform, where state surveys must be integrated to monitor the national picture. She predicted more efforts in the future to integrate data collection by foundations, the private sector, State and local governments, as well as by the Federal government.
Dr. Mor stressed the need for more attention to the reliability and validity of administrative data, given their extensive use. Dr. Hamburg agreed, and said the discussion on that can begin in the Data Council but much happens outside the Department.
Dr. Newacheck noted the Committee's concerns about the absence of population-based data to monitor the State Children's Health Insurance Program and learn from successful programs. He asked about the Data Council's thinking on this. He also noted the Committee's recommendation that the State and Local Area Integrated Telephone Survey (SLAITS) be used as a tool, with a component of State-specific questions designed by the States. Mr. Scanlon said a 5-part plan has been developed. Dr. Hamburg said she would review the Committee's letter. No decisions have been made on this issue, which will be discussed in December. Dr. Starfield stressed the fundamental importance of sample selection.
Mr. Anderson and Mr. D'Angelo co-chair the HHS subgroup on data needs for eliminating disparities. It has been meeting jointly with the Working Group on Racial and Ethnic Data, which is looking broadly at needs for minority health data and developing a strategy for meeting them.
Reviewing the Initiative to Eliminate Racial and Ethnic Disparities, Mr. Anderson explained that the Department selected six areas as a focus over the next decade: infant mortality, cancer screening, cardiovascular disease, complications due to diabetes, HIV/AIDS, and immunizations. There are HHS work groups for each. Dr. Hamberg and Dr. Satcher co- chair that effort. A seventh data group, which will look at how the success of these efforts can be monitored, will begin work once the programmatic initiatives are formulated. It has a liaison on each of the six substantive groups.
Another part of the initiative involves demonstrations in communities. The Department asked for $30 million to do demonstrations in 30 communities, but it was given $10 million by Congress. The objective is to find the best science on eliminating disparities in communities. The decision about how to select communities has not been made.
Mr. D'Angelo then discussed the work of the Working Group on Racial and Ethnic Data, which he co-chairs with Dr. Carter-Pokras of the Office of Minority Health. It reports to the Data Council, which has charged it with developing a long-term plan for improving the collection and use of racial and ethnic data. This overlaps with the disparities charge, which is more short-term. The two groups will produce a joint report by spring, 1999.
Dr. Lumpkin asked how "community" will be defined, and was told this has not been determined and the Department is open to advice. He observed that the definition is critical in analyzing disparities because different definitions can lead to very different findings. He suggested using the limited funds for this project to measure existing initiatives to see what works and what doesn't.
Allison Orris of ASPE, who works on this project, commented that the Data Council regards this as a multi-year effort that will begin with a few interventions and then decide how to apply them more broadly. Dr. Carter-Pokras added that the demonstration grants will be used to focus on a few areas in a given community. Mr. Anderson agreed with Dr. Lumpkin that the demonstration's purpose should be to show what works.
Dr. Carter-Pokras provided a detailed report on the discussion of data issues at the regional meetings. She described some of the concerns about race/ethnicity classification, particularly about the option to identify more than one race and about how the two-question format will work. The issue of how natality data will be tabulated may be an issue of concern for NCVHS, she said. People were comfortable with the decision about age adjustment once it was explained, provided the documents make clear what the standard is. Other issues included funding for data, the need for national and state monitoring and surveillance, and the need for more detailed studies of underlying factors related to Healthy People 2010 objectives -- e.g., poverty or unemployment. These might be framed as new developmental objectives if there are no baselines.
She observed that several approaches to eliminating disparities are needed, including descriptive information, detailed studies of underlying factors, assessment of what does and doesn't work, and quick turnaround estimates with information on emerging issues.
People also were interested in how the targets were set. Most agreed with having a single target, although there was some concern that the "better than the best" approach is unattainable. The need for patient satisfaction data was mentioned several times, along with concerns about the lack of tracking systems on health services access and use. There also was concern about GPRA's emphasis on outcomes while processes are easier to measure at the local level. This "disconnect" makes it difficult to address Healthy People objectives in grant applications. The need for rural health data was noted, along with the importance of training states and others about data issues. The time it takes to make changes was a source of frustration. Related to this was a desire to "find victories in our data," to motivate further action.
Mr. Smolinski then reported on the sessions on eliminating disparities and in general on public comment. He said that each of the regions chose to focus the regional meetings on the disparities issue. Within that, several data issues arose in the three sessions held to date. There was universal support in these groups for the goal of eliminating disparities, not just reducing them, and for using the data tables to show where the gaps are in racial and ethnic data relative to specific objectives. There were varied opinions about a single target versus "better than the best," but much sentiment that the targets should be realistic. The goal of eliminating all disparities received thoughtful discussion, with emphasis that a serious national commitment to eliminating disparities will require the allocation of resources. Native American representatives stated strongly that for their populations, just getting to the national average would be a major break-through, while the goal of "better than the best" could just be discouraging.
There was confusion about having multiple data sources for a single objective and support for having a single source for each objective. People were also concerned about setting targets without plans for reaching them. There were many questions about the impact of changes in race and ethnicity classifications, as well as about what happens with undocumented immigrants and multi-ethnic children in terms of the targets. The issue about having targets for underlying factors such as poverty also was raised.
In response to a question, Dr. Carter-Pokras said the Chicago meeting raised the idea of a separate chapter on data capacities.
To another question, Ms. Wagener acknowledged that some of the targets use different data sources for the numerator and denominator; this is challenging statistically, but not unprecedented. She added that most of the baseline data in the current draft will be updated for the final version. In general, the data are superior to those in Healthy People 2000. Volume 3 will be released in January 2000, with the other volumes. She reviewed a timetable for getting drafts of sections of Volume 3 to the Committee in the course of 1999.
Mr. Mayes mentioned that the Census Bureau is building a Web-based registry of their surveys which should be made public soon. Related to that, several Federal agencies have been looking at data management across enterprises with the idea of meta-data registries. The goal is to increase the use of a common infrastructure among agencies, accessible electronically.
Dr. Lumpkin observed that of the four surveys on which the bulk of the objectives rely, only vital records and BRFS provide state-level data and only vital records give community level data; so the ideal of having community-level data is far off. He suggested that the ability to measure should be monitored between now and 2010. Ms. Wagener agreed, and added that when a local area focuses on an objective, it can develop data collection mechanisms. No areas adopt all 531 objectives. Dr. Lumpkin commented on the problem of oversurveying the public and the need to develop a unified process to improve response rates.
In this context, Dr. Starfield presented a letter brought forward by the Subcommittee on Populations, with six recommendations on Healthy People 2010. The draft called for 1) race/ethnicity and income targets for all objectives and the use of OMB categories; 2) the addition of a separate chapter on information systems and data needs; 3) indication of the most likely primary source of data for each objective; 4) the use of geocoding wherever possible, commensurate with privacy protection; 5) detailed information on the major data sources; and 6) more current framing of the objectives for primary care. Dr. Starfield noted that the fifth recommendation is satisfied by the existence of Volume 3, so the letter will applaud the fact that it is being done. Members and others offered comments modifying the letter, and the Committee then passed a motion approving it as modified. It was agreed that it will be addressed to Dr. Satcher, with a copy to Dr. Meyers, Acting Director of ODPHP as well as the Data Council co-Chairs.
Dr. Lumpkin thanked the panelists and declared the meeting in recess, to reconvene in Subcommittee and Work Group meetings.
The meeting resumed following introductions and some adjustments to the agenda.
Dr. Iezzoni presented a revised Subcommittee charge, and the Committee approved it. The Subcommittee is continuing to work on the Medicaid managed care project and a report on the insular areas. It is beginning a year-long initiative on “post-acute” care, and is starting to monitor survey integration.
The aim of this group's work with the National Center for Health Statistics is to define a vision for health statistics 10 to 15 years into the future, a sense of how NCHS fits into that vision, and a roadmap for it to follow in helping achieve the vision. The project has three parts: a series of commissioned papers, four of which he described; expert focus group panels in January and February to consider a number of issues including the planning objectives and needs for the health care system in five to 15 years; and one or more workshop sponsored by the Committee on National Statistics in late spring or early summer. The workshops will focus on the same questions, building on the results of the focus groups and the papers.
Dr. Starfield suggested creating a compendium of data sources including those listed in Healthy People 2010 as well as non-Federal sources. Dr. Friedman agreed that such a listing is a concrete way to define health statistics. Mr. Scanlon commented that the HHS Data Directory will be a useful resource in this regard.
Mr. Blair suggested moving health statistics in the direction toward which the health care information infrastructure is moving. He noted the relevance of the work of other nations, on which the NII Work Group is compiling information. Dr. Friedman agreed that the conceptualization of the health information infrastructure is probably "where we need to end up."
Dr. Lumpkin agreed, and suggested that the Work Group also evaluate what he calls "the third wave of the Federal/State relationship" with regard to health-related information systems, wherein the Federal government provides States the core of a system and the money to make it fit what they are doing. The country has not yet reached this stage, he said.
At its first meeting (the previous day), the Work Group worked on its charge and work plan. Four items emerged for the coming year, including two involving close work with the Subcommittee on Populations (its parent Subcommittee). For the forthcoming Medicaid managed care report, the Work Group will develop the chapter on data needs and gaps in measuring quality of care and ways to close the gaps. Similarly, it will focus on ways to measure quality in the context of the new project on post-acute care, viewed in terms of the continuity of care across settings. The group also will host a roundtable for people involved in measuring quality, to talk about the data issues they face and how these could be remedied. All three of these initiatives will contribute to development of a road map for improving information systems, working in collaboration with the Subcommittee on Standards and Security. Ms. Coltin noted that all of the Work Group's activities will involve a lot of collaborative work.
Mr. Blair observed that through this Work Group and the one on the computer-based patient record, the Committee is defining both ends of the spectrum: data standards for patient clinical information, and the data needed to evaluate the care they receive.
Dr. Lumpkin announced that the Executive Subcommittee approved a new status for NCVHS members who want to be informed about the activities of particular Work Groups or Subcommittees without being full members. They can notify Ms. Greenberg that they want to be on the mailing list and listserv of that group as a corresponding member, to be kept abreast of its activities without being counted as a member for the purpose of quorums and votes.
Ms. Griffith is Interim Director of the Computer Science and Telecommunications Board of the National Research Council, which conducted a workshop in 1995 that was a precursor to this effort. The Internet enhancement study project was requested by the National Library of Medicine stemming from its interest in developing the capabilities of the Internet for medical applications. The Committee on Enhancing the Internet for Medical and Biomedical Applications: Technical Requirements and Implementation Strategies is chaired by Edward Shortliffe of Stanford University and staffed by Jerry Sheehan. It has an 18-month charge. A related activity is a recent study and report by the President's Information Technology Advisory Committee on the needs for Federal investment in basic research in computer science.
The general purpose of this study is to identify the technical needs of health care and biomedical communities with respect to the Internet, to see what can be done to facilitate more routine use for the medical field. Examples are increased band width, with particular band width on demand; quality of service; audio capabilities; and security. The NRC Committee is looking broadly at the provision of health care, public health, research, medical education, and other factors, all from the standpoint of the next generation Internet (NGI), which will have expanded band width. Ensuring that the NGI will support health care requires identification of specific applications and their technical requirements -- e.g., tele-imaging, collaborative research, patient education, clinical monitoring, record-linking, and so on.
The factors that currently stand in the way of these uses include insufficient band width, the lack of priority access, latency (delays in transmission), inadequate robustness and reliability. Interoperability is another issue that needs to be addressed.
This project began in the summer of 1998. The committee, which first met in September, combines professionals from the fields of health care and information technology. Its March 1999 meeting will be in Washington, D.C.; it will do site visits in California in December. Portions of its meetings are open to the public.
The issues the committee is addressing include what to do about proprietary networks, how to "migrate" things off the networks and onto the NGI, and how to reduce costs. In addition, the committee wants to identify what can be done now and what will take additional resources to do later. It also wants to identify transactions that are possible using more limited capabilities. The committee wants as much input from the health and information communities as possible.
Updates of the project are available on the National Academy of Sciences' Web site (www.NAS.edu), under "Current Projects."
Mr. Blair asked Ms. Griffith which of the issues on the NRC committee's agenda can be solved through intranet technology. She replied that indeed, some things such as security can be achieved through intranet technology, but the notion is to move away from proprietary intranets and to develop more generic capability.
Mr. Gellman asked if the project is likely to propose various "gee-whiz . . . privacy- invading technologies and data linkages" while only giving lip service to "doing something about privacy." She said the committee is very sensitive to privacy issues and at its first meeting placed privacy high on its agenda. One approach to privacy is to seek security enhancements to the Internet to limit access. Asked if higher encryption standards might be recommended, she said the question would certainly be addressed. Mr. Gellman asked if talk of priority usage on the Internet might set off a "range war," and she said people are looking at that issue already, and firms are starting to offer that service.
To a question by Dr. Cohn, Ms. Griffith said the committee is interested in "base hits" like EDI standards, and not just in "hitting home runs." She agreed with him that the group would have to extend itself to the health care business community, which is not well represented in the membership. The committee has identified the types of perspectives and expertise it wants to bring in for briefings. It welcomes specific suggestions of organizations and individuals.
Dr. Fitzmaurice noted the equity issues in this domain and asked whether the committee would look beyond "bells and whistles" to how to efficiently and equitably allocate these capabilities to the population. Ms. Griffith said access is one of the issues the committee has identified. This relates to the "last mile" issue -- how to get technology all the way to those who can benefit from it -- as well as to general issues of equity. Among other things, the committee will be researching the economics of future services.
Dr. McDonald noted that HL7 and X12 have an e-mail Internet proposal with built-in encryption. He also commented that computers are so cheap now that the economics of telecommunications could be changed radically so it is accessible to "all kinds of people."
Asked about the implementation of the committee's recommendations, Ms. Griffith said she expected it would identify several things that can be done across a series of time frames.
Dr. Newacheck asked to what extent the committee, with its "medical and biomedical" rubric, might address the ways the Internet can be used for vital and health statistics. Ms. Griffith said the committee is interested in public health opportunities, and she noted that biomedical research is a major user of vital and health statistics. Dr. McDonald observed that in the context of biomedical research, public health infrastructure issues are not much of a stretch from collaborative multi-center clinical trials.
Dr. Lumpkin proposed that Dr. Cohn make a presentation to the NRC committee on behalf of NCVHS at its December meeting, and Ms. Griffith agreed.
The current CDC effort follows up on a study completed in 1996 by the Lewin Group, outlining strategies for gathering information about the public health infrastructure. CDC worked with some 120 organizations to develop this definition of the public health infrastructure (which is used in the public health chapter in Healthy People 2010): "the systems, competencies, relationships and resources that enable performance of the 10 essential services of public health for every community." Dr. Nicola described the process of defining those "essential public health services," culminating in a consensus conference in 1994. CDC orients itself to this list of 10 services.
The aforementioned study recommended various national surveys as well as case studies as means of gathering information. It also recommended a research agenda to identify best practices, and that the project have a lead Federal agency and a steering committee. It proposed testing the validity of "the essential public health services" as a framework.
Dr. Nicola posed the question of why we should measure infrastructure and gave three answers:
Currently, the information on such things as training and local health department closure is all anecdotal. Communication with the nation's putative 2,888 local health departments is difficult, at best. Policy questions concern such matters as the kind of structure or resources needed to deliver essential services (e.g., drug surveillance and cluster investigation). The national initiatives to be supported and evaluated include the Secretary's infrastructure initiative, national performance standards for public health agencies, and the initiative to eliminate racial and ethnic health disparities.
Many partners will be involved in this enterprise. Carrying it out will begin with a system of sentinel sites, followed by public health agency registration, national surveys, and case studies. The sentinel sites are envisaged as a representative sample with which CDC could work longitudinally. Surveys and case studies would be carried out with them. CDC believes this data system will lead to successful initiatives, improved policy, improved resources, and ultimately improved health outcomes.
Dr. Friedman hailed the sentinel sites approach and asked about the operational definition of "public health infrastructure." Dr. Nicola said the emphasis is on the capacity to perform services in the community. This involves but is not limited to local health departments. Dr. Friedman observed that the role of local departments varies greatly among states; high managed care penetration is blurring the division between public and private health activities. He cautioned against focusing on local, rather than State, health agencies. Dr. Nicola replied that the project will select 75 sites, which may include a state agency performing the tasks of local health departments. Planners are thinking about the impact of managed care.
Other members also asked about basic definitions. Dr. Nicola said the abstraction will become more clear and concrete as the work progresses.
Mr. Blair asked whether planners are anticipating the changes in the public health world that may result from a stronger health care information infrastructure, with, for example, more telehealth and continuity of care and decision support. Dr. Nicola said these are the kind of advances people are hoping for, and some of the public health efforts -- e.g., the bioterrorism initiative -- are devoted to promoting them and taking advantage of them.
Dr. Amaro praised the inclusion of territorial health officials in the design for the project, since they are often excluded. She noted that the Subcommittee will issue a report with recommendations about envisioning a public health infrastructure that encompasses these areas. She also suggested that the project managers look at the ONDCP national drug control strategy and its performance measures in terms of the implicit data needs. Dr. Nicola, who is the "coach" of the CDC's Pacific Island advisory committee, affirmed that CDC has a strong desire to help the insular areas develop. He was receptive to Dr. Amaro's suggestion that one of them be a sentinel site.
Dr. McDonald commented on State activity on registries and surveillance, and expressed hope that Federal activity would complement and support State activity.
Dr. Lumpkin praised the CDC effort and pointed out that it will measure the realities of the public health infrastructure as it currently exists, often in very rudimentary form, and then follow sites in transition. He noted that because local departments are typically only one- third Federally funded, focusing at the local level misses both the value-added and constraints at the state level. This should be kept in mind for the next step. He suggested also that some states may want to contribute to this measurement initiative to extend it, because they need the same information and their mission is to help local health departments be successful.
Dr. Nicola said CDC would continue to look at national surveys of public health activities in addition to working on the sentinel sites, and it encourages the work of the Public Health Foundation. He added that there is some talk of a sentinel network of State health departments, to document the State role. Dr. Lumpkin predicted that the entire effort, which is replicable, will snowball into more data-gathering than CDC may expect.
Although QISMC is a joint Medicaid/Medicare activity, Ms. Page focused on the former because that is what she works on. HCFA began this initiative in 1996 to develop standards that Medicaid and Medicare could require of managed care plans, to promote higher quality. First, existing Federal and private standards were reviewed and a draft set of standards was released in the Federal Register in January 1998. There was extensive public comment. The final standards were released in September, updating Medicaid quality standards (QARI) disseminated in 1993. One aim of the revision was consistency across Medicare and Medicaid standards. The standards also will serve as a tool for value-based purchasing.
The QISMC document has three components: an introduction, the standards, and a set of guidelines. Ms. Page stressed that the standards are advisory to the States, and not requirements. In the past the States have appreciated having such tools. There are incentives for States to use them in that they mirror the BBA regulation, so using them constitutes compliance with the BBA rule; also, using them makes the States better business partners in that they are consistent with Medicare standards. HCFA will revise the standards if the Medicare interim final rule is revised, so the two are consistent.
The standards address four domains of health plan activity: quality assessment and performance improvement, enrollee rights, health services management, and delegation. Ms. Page briefly discussed each one in terms of the requirements imposed on plans and the actions to be undertaken by Medicaid or Medicare administrators. Regarding the first, managed care organizations (MCOs) will report using standardized performance measures required by the states, generally HEDIS or modified HEDIS measures. The requirements are minimum performance levels, performance improvement projects, and correction of systematic problems. HCFA is trying to identify and promote underlying systemic change that constitutes sustained improvements in care, and it expects to see demonstrable improvement through the measures. Both clinical and non-clinical areas will be measured in the Performance Improvement Projects (PIPs). HCFA specifies the fairly stringent methodology it regards as appropriate for measuring performance, and MCOs are expected to measure against national or state benchmarks. Information systems are considered adequate for these purposes.
Plans are expected to have policies in place to protect enrollee rights. The policies and rights identified by HCFA are similar to those outlined in the Consumer Bill of Rights. QISMC standards are attentive to individuals with different cultural backgrounds or with complex medical conditions. Several provisions are targeted to vulnerable populations. Enrollees are to receive written information on their rights and responsibilities, to be available in the languages of the plans' major populations. The BBA proposed rule requires States to have a methodology to determine the major population groups and languages in the State, and to share it with the MCOs. A provision that has received a lot of attention concerns the initial assessment of enrollee health care within 90 days of enrollment. This does not have to be done face-to-face.
Health Services management standards concern availability, accessibility, coordination of care, provider qualification, and other matters. Plans are required to identify enrollees with special needs and to assess and monitor their medical conditions.
HCFA has received the most comments about the standard that requires a designated provider who is responsible for coordination and continuity of care. MCOs are required to adopt practice guidelines based on medical evidence or consensus. Asked if HCFA monitors compliance, she said the monitoring aspect has not been worked out yet.
Because delegation to other entities is a widespread practice, it is addressed in the standards. MCOs are expected to oversee and be held accountable for functions they delegate.
Ms. Page said QISMC is just part of the States' quality strategy. Other tools include annual review by an external quality review organization. The BBA requires states to figure out how to use the various quality assessment tools to develop an assessment and performance improvement strategy for its contracts. QISMC provides a tool for doing so. It calls for states to have in their strategies access standards and other standards for MCOs as well as monitoring procedures and external quality review organizations. The documents set up so far do not provide a mechanism for states to monitor for compliance with the standards, but these are being developed. Because QISMC is voluntary, some states can use it immediately. The experience with QARI suggests that States will use it, phasing it in.
She explained that Medicaid does not regulate HMOs directly, but rather it regulates States. It does stipulate the provisions for contracts, through the BBA, which specifies standards for states. States may use something other than QISMC if they prefer.
Finally, Ms. Page described the measures for monitoring QISMC compliance and for providing technical assistance. Medicaid has identified areas for which protocols need to be developed, such as verifying quality improvement projects. JCAHO will be developing protocols in these areas, which will be available by March 1999. HCFA has begun an initiative to give technical assistance, through a satellite broadcast and training. Jim McGee is producing a technical manual.
In response to a question, Ms. Page said the BBA provisions she described are in a special section on HMO contracts. Prior to the BBA, no statute had a provision addressing a health plan's quality, as a result of which Medicaid regulations were "quite skimpy."
To another question, she described the expectations behind the provision about cultural competency as calling for, at a minimum, written material in languages appropriate to major population groups plus translation services. Ms. Ward noted anecdotal evidence that plans and providers each expect the other to pay for translation. Ms. Page said HCFA would hold the plans, not the providers, responsible for this.
Dr. Starfield and Dr. Iezzoni praised the goals and content of the QISMC program. Dr. Iezzoni added a caveat, based on the findings of the Subcommittee on Populations from site visits, that many providers may lack the capacity to carry out the project. She urged HCFA to do its own monitoring in the community to see where technical support and resources are needed to achieve the program's goals. The lack of analysts in the field is one of the serious problems, one the Subcommittee is thinking about how to address. Many states lack the capacity as well, and/or important data, such as on the race and ethnicity of enrollees. Ms. Page reiterated an earlier point, that an important piece of QISMC is helping States figure out how various regulations and programs fit together with respect to measuring quality. She added that the Balanced Budget Amendment has the flexibility to allow a greater Federal commitment of money to support quality activities.
Dr. Lurie said the saying of a friend -- "Don't get mad, get data" -- has become her working motto. She noted that Dr. Satcher has articulated five priority areas for public health: a healthy start for every child, mental health, eliminating disparities attributable to race and ethnicity, global health, and creating a climate that encourages healthy behaviors. These have become the focus of the Office of Public Health Services.
One of her major responsibilities is the effort to eliminate disparities, with the Healthy People process as a major mechanism, with its new single target for all populations. She noted that progress in eliminating disparities down to the local level in the six priority health areas (enumerated earlier by Mr. Anderson) will not be possible without a far better national data infrastructure than currently exists. To make the task more manageable than the 531 Healthy People objectives, OPHS asked IOM to develop a set of sentinel objectives to clarify more focused goals on which communication with the public can focus. That group is struggling with the usual data constraints and the question of whether measurability should be a criterion for choosing objectives.
Dr. Lurie noted the need to expand the government's geocoding capability as a means of heightening coordination and accountability. She added that the opportunities offered by QISMC at the community level to expand into public health monitoring again depend on better data. Program evaluation, such as on CHIP, is another key area, as is assessing cultural competence. All of these, she said, are areas about which she hopes to be in dialogue with the National Committee.
Dr. Amaro spoke to the need to push the data system limitations for eliminating racial and ethnic disparities, and her sense that there is great resistance to this given the fact that people have been talking about it for decades without the resources being allocated to take action. Dr. Lurie said one of her goals is to embed a system of data collection in the public health system to such an extent that after the eliminating disparities initiative is over, the tracking will continue. She noted the need for heightened community-based advocacy for data and reporting of this kind, along with changes within public health institutions and the health care system. One issue is the lack of agreed-upon uniformity for collecting and measuring these factors.
Dr. Starfield noted the Committee's interest, as well, in SES disparities, and she asked about HCFA's reputed reluctance to collect data on income because of people's sensitivities about this. Dr. Lurie agreed that this information is important and it is difficult to obtain it. She speculated about developing existing tools such as geocoding to do better in this area, and she commented on the idea of sentinel communities and populations. Noting that the U.K. has a long history of successfully collecting these data, Dr. Friedman observed that geocoding is a very indirect way of addressing the problem.
Dr. Iezzoni asked whether Dr. Lurie's group would be thinking about uniformly categorizing functional impairments in order to look at disability status. Dr. Lurie said the office is not set up to do that, but it will encourage all parties who can contribute to this goal. Everyone is convinced of its necessity. Further, Dr. Iezzoni urged a serious look at the ICIDH, at least as a basis for a functional status measure. She agreed with Mr. Scanlon's suggestion that ASPE brief the Committee about its research in this area. Dr. Lurie asked to be invited to that meeting.
The Work Group will host hearings on December 8-9 to solicit feedback from various groups on whether its focus for the work plan for the next 18 months is on target.
The Work Group also has worked on its charter. Discussion of the possibility of modifying the group's name has been deferred until Dr. Detmer can participate.
In addition, the group reviewed the profiles of standards, data sets and code sets in the Inventory of Standards, to assess their value as a resource.
The Subcommittee was briefed the previous day on the claims attachment standards and discussed the possible need for a hearing. Six content attachments were discussed: ambulance, emergency room notes, rehabilitation, lab results, medications, and narrative notes. One concern that the Subcommittee has asked the Work Group to assess is whether specialists such as emergency physicians and ambulance companies have had enough input into the SDO process. If not, the Subcommittee may hold a hearing.
Upkeep and maintenance of transaction standards was another topic of discussion, as was the issue of enforcement. These will remain on the agenda.
Yesterday's meeting was devoted to a presentation from the National Association of Insurance Commissioners about its Health Information Privacy Model Act. States can adopt some, all or none of this model. The Subcommittee is considering offering formal comment on the model from NCVHS.
The group also planned its February 2 meeting, which will include two panels, one on use of identifiable health information for pharmaceutical marketing and the other on employers' use of such information.
There was some discussion of the EU directive, as well.
Regarding Committee business, Ms. Greenberg reminded members that conference calls to be used for deliberation must be announced publicly in advance. Also, all e-mail messages are to be copied to the NCVHS archive address.
Dr. Friedman praised the support of Dr. Deering for the Work Group, which reviewed its charge at its meeting the previous day. The Work Group's first activity after presenting the concept paper to the Data Council will be to agree on clear definitions for various terms used in the concept paper. Next, a matrix of activities on the NHII will be developed and analyzed as to areas of progress and what needs refocusing. There is also a need to assemble material on HII activities in other countries.
This November 2-3 meeting had educational and organizing objectives, and both were achieved. It was attended by 83 people from the public health and health services world, including six NCVHS members. The educational goal was to help people understand HIPAA and its implications for their activities.
Organizers are now trying to spread the word and get more input for the final report by following up with participants and also contacting others in their fields.
Another objective was to start identifying data needs, something that began in the background papers and continued in the discussion. NCHS is aware of the need for a user- friendly dictionary of data elements to make implementation guides and the like more widely accessible. Work will continue on this.
There was support for the third objective, i.e., expanding representation in content committees and SDOs to include these communities and perspectives. One very informative session had a panel of content committees and SDOs, and both HL7 and X12 strongly encouraged participation from these groups. The workshop participants recommended a consortium be developed to identify needs and organize representation to the SDOs for input in the decisions still to be made about transaction standards, claims attachment standards, and so on. Both the National Association of Health Data Organizations and the National Association of Public Health Statistics and Information Systems expressed interest in helping to organize the consortium, and the NCHS and AHCPR organizers of the November meeting are continuing discussion with them. They also hope to bring in AHSR and CSTE.
Dr. Fitzmaurice commended Ms. Greenberg for her vision in conceptualizing and planning this very successful event, which reached many people who had not previously been aware of HIPAA and its relevance to them. The attendees were "doers," he said, who wanted to get together and to help determine data content so it meets the needs of public and health services research.
Dr. Starfield also praised the event, as did several other NCVHS members who attended. She lamented the limited participation of health services researchers and wondered how their interest could be stimulated. Dr. McDonald commented that there was a clear sense of the public health mission, with interest in doing what could be done "on the coattails of HIPAA" but commitment to other things as well.
The background papers prepared for this event, plus final recommendations and reports, will be posted on the Lewin Web site (www.lewin.com/hipaa).
The next NCVHS meeting is February 3-4. The agenda will include two panels on standards for public health surveillance, which Dr. Fitzmaurice and Dr. Lumpkin described briefly.
Dr. Iezzoni described plans for another panel regarding HCFA's data-gathering mandate to support risk adjustment for capitated managed care plans.
Subsequent meetings in 1999 are scheduled for June 22-24, September 27-78, and November 3-4.
Dr. Lumpkin then 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 March 23, 1999
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Acting Chair Date