The Subcommittee on Populations of the National Committee on Vital and Health Statistics was convened on July 14 and 15 in the Hubert H. Humphrey Building in Washington, D.C. The meeting was open to the public. Present:
The Subcommittee on Populations held a two-day hearing on the health data needs of the Pacific Insular Areas, Puerto Rico, and the Virgin Islands. Their purpose was to learn from the representatives of these areas and together to develop recommendations for improving health data there.
The meeting began with briefings about the federal government's roles and projects in these areas, with reports from the following people and agencies:
Jill Feasley then discussed the IOM report "Pacific Partnerships for Health," which she directed. It looked at the delivery systems and made four key recommendations, with implications for data systems. The thrust of the report is to build capacity -- or in the words of the proverb, to "teach a man to fish."
The Subcommittee then was briefed on local health data needs, issues and perspectives by the following representatives of the insular areas:
The second day of the meeting was devoted to pulling together the themes and considering possible recommendations to the Secretary. Public health workers in these areas are contending with a variety of systems issues, particularly relating to personnel shortages for coding, analysis, and planning. Vital statistics data are often incomplete and in some cases out of date. Correct estimates are made more difficult by population fluctuations and other challenges. An underlying cause of problems is inadequate funding, and several representatives mentioned the inequities in the funding for states and for territories.
There was considerable discussion of human and attitudinal barriers related to data sharing, a lack of commitment to data quality, and the failure of political leaders to recognize the importance of the information infrastructure. The subsequent discussion of training included attention to possible ways to train political leaders in public health issues. Another barrier for these areas is the fragmented nature of categorical federal funding, compounded by the difficulty of participating in emerging integrated approaches because of insufficient funds.
Training and options for training including sources of payment were explored. Specifically, two foci of the training discussion were the transition to ICD-10 and standardization HIPAA. In these and many other areas, the parallels to challenges in the mainland U.S. were noted. In the short term, participants felt the federal government should focus on specific technical training; for the long term, it was suggested that local health ministries partner with local higher education institutions to train and educate future staff for health data systems.
The meeting emphasized problem-solving, with discussion of various models for delivering training, possible collaborations among agencies and jurisdictions, and creation of new entities such as a public foundation to which the insular areas could apply for funding for data development projects. There was agreement on the necessity of identifying priorities, both by the Subcommittee as it develops recommendations and by the insular areas as they invest in their infrastructures. An investment guide process was proposed to help the territories and islands decide on the most effective investments.
The group agreed on the primacy of three principles to guide the development of recommendations and of Departmental programs: self-determination, inclusion, and social justice and equity. The Subcommittee will meet on September 17 to develop its recommendations, which it hopes to finalize and send to the Secretary in the Fall. (Ms. Greenberg suggested linking them to the recommendations of the former Subcommittee on State and Community Health Statistics.)
Members identified the following elements as possible recommendations:
Following introductions, Dr. Iezzoni explained that the Subcommittee's purpose in holding this meeting is to learn from the representatives of the insular areas and together to develop recommendations for improving health data in their regions. She stressed the diversity represented and the need to respect local culture in considering solutions.
This Office has general responsibility for relationships between the federal government and the insular areas of Guam, the Northern Marianas, American Samoa and the Virgin Islands. It also has responsibility for technical assistance in the Freely-Associated States-- Palau, Federated States of Micronesia, and the Marshall Islands. The Office of Insular Affairs produces reports and provides technical assistance (TA), totaling some $6 million in FY1999. It funds health and anti- drug programs as well as statistical activities. The U.S. government emphasizes TA and training -- capacity building -- rather than data collection, but it does fund a few surveys. There is a "wide gulf" between these areas' needs and the resources available.
Mr. Miller noted that everybody wants statistics, but nobody wants to pay for them; there is limited local interest in conducting household surveys or tabulating the data; and cash-strapped governments are inclined to cut statistical budgets. The Census Bureau conducts surveys in some areas but not others. The lack of reliable population estimates has been a generic problem. The Census Bureau has official estimates, but he would not vouch for their accuracy. The surveys funded by the Office of Insular Affairs do generate some health data, but its main thrust is to support training and coordinate with local governments to ensure that the most important statistics are emphasized. Statistical training is provided by the Census Bureau.
Subcommittee members noted their interest in identifying the specific training needs of each region.
This HHS region includes The U.S. Virgin Islands and Puerto Rico as well as New York and New Jersey. The regional office serves as a bridge between federal policy makers and the jurisdictions, using data to develop programs and identify needs. It is difficult to mesh and compare CDC statistics and those of the jurisdictions. The office brings programs of various federal agencies and offices to the jurisdictions and has been able to cross-cut them, e.g., with maternal and child health and community health centers. Mr. Davidson noted the contrast between the quality of data from the two states in the region and those of the Caribbean jurisdictions.
The Pacific island jurisdictions include American Samoa, the Commonwealth of the Northern Mariana Islands (CNMI), the Republic of the Marshall Islands, the Republic of Palau, the Federated States of Micronesia (FSM), and Guam, spread over a huge area and several time zones and across the international date line. Their populations are small, incomes are very low, and the economies are struggling and in most cases dependent on U.S. assistance. Half of the populations in many of these jurisdictions are under age 18. The cultures and languages in the areas are many and varied. The local entities are grouped into two territories and three Freely Associated Nations (FANs). Residents in Guam and American Samoa are U.S. citizens.
The U.S. agencies and programs working in this area, including CDC, HRSA and SAMHSA, are called public health operating divisions. U.S. assistance is provided through grant programs and annual payments for economic development. There is a hospital in every jurisdiction; the primary care system is generally poor. Data are not very reliable, and transportation and telecommunications are limited and very expensive, although Internet capabilities are becoming more available along with the possibility of telemedicine in some jurisdictions. Video conferencing is only available at great expense.
The Region IX office identifies and provides program and policy advice on issues concerning all HHS operating divisions, the Department as a whole, and other departments. They work with the Departments of the Interior, Energy, Commerce, and State. Dr. Iser said one focus of his work plan is continuing education for health care providers. He also works with the Office of Minority Health on the AA-PI initiative, and he praised the effort to get better data on Pacific Islanders. He described many of his office's projects in the Islands, most involving interagency collaborations, and stressed the dependence of health planning on good data.
Jill Feasley directed the IOM study initiated by HRSA to assess the status of the health care delivery system in the Pacific Basin and develop a plan for future involvement with the region. A committee of 12 experts developed a report, which she summarized in terms of its methodology and recommendations. At the outset, she corrected the misconception that data are poor because the Pacific cultures are oral cultures and not used to writing things down. All have developed health plans that use data, although the data are "less than reliable" and difficult to compare among jurisdictions. She noted that none of the data from the jurisdictions are included in the Healthy People objectives.
The IOM study focused on the delivery system and offered four major recommendations:
Concerning data, the IOM committee recommended development of a standardized and cooperative regional health information system, spearheaded by the Pacific Island Health Officers Association (PIHOA). They recommended the use of block grants, which require accountability measures, something in which all the jurisdictions have expressed interest. A regional watch-dog type organization was also recommended, to provide technical assistance and to monitor data quality. Ms. Feasley stressed the analogy of "teaching a man to fish" rather than giving him a fish, noting that the current conditioning amounts to providing monetary rewards for data that may have no validity.
The data dimension of the third recommendation is the suggestion that each jurisdiction develop a health improvement benchmarking process that involves the community. Regarding training, the IOM committee urges the use whenever possible of local educational resources, which exist in each jurisdiction.
Dr. Koo focused on CDC's work in public health surveillance, the definition of which is broadening and which depends on voluntary partnerships often mediated through the Council of State and Territorial Epidemiologists. Other bodies involved include PIHOA, WHO, Western Pacific Region Office of WHO (WPRO), and the South Pacific Commission. The categorical nature of funding for public health and surveillance makes it difficult to set cross-cutting priorities; another challenge is trying to set aside funds specifically for data collection activities.
Although CDC provides software and long-distance technical support to the insular areas, the cost of travel makes it difficult to provide training. Some CDC categorical programs have conducted regional training, i.e., immunization, TB, HIV/AIDS and STDs. These programs have been able to provide funding and direct support. More training is needed to do the analytical work, and it is hoped that the regional epidemiologists can participate in capacity building in this region.
Pacific Basin jurisdictions also relate to the South Pacific Commission, which has taken the lead in disease surveillance in that region. Their list-serve, PACNET, permits information sharing about disease. Two epidemiologists in New Caledonia are monitoring the list-serve and working on quality and standardization.
CDC has initiated and is now partnering with HRSA in a program of "investment analysis," which provides a mechanism for flexibility in spending categorical funds. CDC also funds a regional epidemiologist, based in Pohnpei.
Most of NCHS's work in the insular areas is on vital statistics. Puerto Rico, the Virgin Islands and Guam are part of the national vital statistics system, and NCHS recently started talking to American Samoa and CNMI about obtaining data which they hope to publish with 1997 data. Puerto Rico and the Virgin Islands participate in components of the vital statistics cooperative program (VSCP). For Guam, NCHS obtains copies of records and codes the data in- house, and this is what they propose for American Samoa and CNMI. VSCP participants receive funds that help support their statistical infrastructures, and NCHS also pays a modest amount for copies of paper records.
Regarding flexibility, Ms. Freedman noted that it exists "within certain constraints": states and territories can decide what data they collect, but there are contractual requirements for such things as birth and death certificates. On training, she said NCHS offers many free courses but cannot afford to pay travel and expenses, thus limiting access for people in far-removed areas. There is interest in the courses, which many territorial staff have attended, and she suggested discussing the issue of reimbursement.
HRSA's branches include the Bureau of Primary Health Care, with 20 grantees in Puerto Rico, two in the Virgin Islands and four in the Pacific Islands; and the Maternal and Child Health block grants. The agency funds grantees and receives data from them. All its data are aggregate, generated from service delivery. They are working on using administrative data for performance measurement, recognizing that the data only cover those who receive services. The quality of the data they receive varies, but they do have some requirements and they audit the data. As in the states, HRSA supports community health centers in the insular areas and works with them to develop performance measures, which they expect to link to other data sets.
Dr. Rouse pointed out that data are needed to focus on strengths, not just on problems. Data are becoming more critical within SAMHSA to monitor the use of block grants for substance abuse and mental health. She also observed that rural areas in the U.S. have the same difficulty meeting federal requirements as do the islands. She described several of the agency's programs, including the PATH program on reducing homelessness, which has data on the insular areas.
She reflected on the need for flexibility and judgment in finding the best way to get information, and specifically on the importance of the informant and sensitivity to cultural factors and local context. SAMHSA stresses collaboration and the development of local ownership in its approach to data collection. It is trying to develop community work groups, and investing in locally-based training efforts.
Finally, Dr. Rouse identified several issues for the Subcommittee's consideration, starting with the need to develop the local work force in such areas as computer expertise, health statistics, and behavioral science. Another issue is contract restrictions in funding streams and the difficulty of tracking performance relative to funding sources while also trying to integrate programs. Planning is fragmented, due to such factors as distance and turnover. Resources (e.g., diskettes) must be shipped in. Language is another challenge. And even when programs are operating and providing services, acceptable documentation is often not available.
A small fraction of HCFA's Medicaid and Medicare beneficiaries live in the Pacific Islands, Puerto Rico and the Virgin Islands. Because of its form of reporting plus underlying infrastructure problems, currently it has little data on those areas. One source of Medicare data is the peer review organization programs, which exist in the insular areas. The Quality Indicator System program developed a national base of QI statistics in specific areas a few years ago, but the sampling frames in the areas under consideration were too small to show up in this program. However, there has since been a shift to a more local focus. Other data sources include surveys and certification, but data quality issues have limited the supply of information from the insular areas.
Today, programmatic changes offer hope of better data in the future, although comparability issues will remain for the territories. In Medicaid, states have shown interest in developing consistent tools and approaches within MSIS to allow greater comparability among jurisdictions, and HCFA is encouraging this development. These tools would be available to the insular areas.
In Medicare, HCFA plans to begin national surveillance focusing on several key clinical areas, with ongoing data collection based on medical record review. Also, the PROs will be using standard national indicators to look at several focal clinical areas, and the territories and islands can participate in this if they so choose. The aim is to develop a tool-based approach to help local communities do their own data collection and analysis. Tools are available on the Internet for free, and are in use worldwide. These provide opportunities for the islands and territories to improve information.
Mr. Mayes noted that PROs are well equipped to provide technical support to local health infrastructures, adding that HCFA is now emphasizing coordination with local public health departments. Discussions could be held in the insular areas regarding new collaborative projects, and he invited proposals, noting that HCFA's move to more granular data makes targeted projects possible. He also encouraged health professionals in Puerto Rico, the Virgin Islands and the Pacific Islands to approach their PROs about developing more collaboration.
Donna Green, a delegate from the Virgin Islands, expressed the hope that new money being made available for setting up systems would not come out of the island's cap, thus limiting what can be done in other areas. Dr. Iezzoni asked Mr. Mayes to get back to delegate Green about this question.
Dr. Mor and Dr. Amaro raised the issue of the lack of race/ethnicity data on Medicaid and Medicare beneficiaries, and Mr. Mayes said he is aware of no plans at HCFA to expand race and ethnicity data. Dr. Amaro observed that the lack of such data is a problem, and she asked how the Committee should direct a recommendation on this matter. Mr. Mayes noted that HIPAA regulations prevent HCFA from unilaterally adding categories to its administrative data. However, there is more flexibility on the clinical side, and he suggested working with the PRO structure to address this issue. The OMB guidelines will govern the content and structure of HCFA's enrollment data, which will be easier to link to other data as a result of standardization under HIPAA.
Dr. Iezzoni took the opportunity to question the representatives of the islands and territories participating in Medicare and Medicaid about their preparations for compliance with HIPAA's new electronic transmission standards. Dr. Michael, Dr. Zamora, and Mr. Camacho all said they were unaware of these regulations, with Mr. Camacho adding that Guam will take this into consideration as it upgrades its information systems.
Dr. Iezzoni remarked that the Subcommittee must return to this topic of education about HIPAA standards. She agreed with Dr. Amaro that in addition, feedback is needed from the insular areas concerning the potential implications of the regulations for resource use and needs.
The Energy Department provides medical care to a small group of Marshall Islands residents because of their exposure to U.S. nuclear weapons testing in the 1950s. They collect data on this group and issue a report every five years. The program is now in transition from having medical care provided by a biannual medical mission to ongoing community-based primary care to be provided by the Pacific Health Research Institute. In addition to treating radiation related illnesses and caring for other conditions, this program intends for the first time to build the public health infrastructure. Enhancing data collection capacities for the Marshall Islands as a whole will be part of this effort, working in partnership with other organizations.
Dr. Iezzoni first introduced Yvonne Benner, legislative director of the Office of Hon. Carlos Romero Barcelo. Ms. Benner conveyed Congressman Barcelo's thanks for holding this hearing, and his offer of support. She noted that the children's health initiative highlights the need for good statistics, because statistics translate into money for the states and territories. She said Puerto Rico is typically short-changed, although its residents are U.S. citizens -- for example, in the children's health initiative and in the Medicaid allocation. Congressman Barcelo questions how the U.S. can discriminate against some of its citizens, and he believes better statistics could contribute to greater equity.
Dr. Zamora said that health care reform in Puerto Rico is resulting in a restructuring of health department functions, following ASTHO recommendations, and a transition to managed care. In addition to maintaining registries and gathering vital statistics through registrars, they participate in the CDC Behavioral Risk Factor Study, supplementing telephone calls with a household interview sample to estimate the 25 percent of the population without phones. They collect some mental health and substance abuse data, but need to collect more data, and they have a study similar to the Health Interview Survey, coordinated by CDC. The data are of excellent quality but not timely, because too few staff people are doing too many jobs.
There are gaps in the areas of experienced analysts and other skilled and trained personnel; mental health data; and (the greatest gap) integration of different systems and agency data. The chief resources needed are human resources, such as informatics consultants to advise on reducing redundant data gathering and integrating data bases. Dr. Zamora read the recommendations of a 1997 National Association for Public Health Statistics and Information Systems and the National Center for Health Statistics (NAPHSIS/NCHS) technical assessment team, noting that Puerto Rico followed the recommendation to acquire more computers for staff use. She concluded by pointing out that Puerto Rico is a multi-racial society and people's racial and ethnic makeup is not clear-cut. Asked to comment on the new OMB guidelines, she predicted they would be very confusing there because people do not think of themselves in terms of such categories, except for "multiracial."
She talked with Dr. Harding about the need for a human infrastructure to use computers, stating that the people are available because they have been retraining health department personnel. What they still need is a statistician to analyze the data, but, they are competing with private sector employers who can pay higher salaries.
Dr. Amaro asked about Puerto Rico's system to track medical services by tracking individual level data, particularly regarding the unique identifier and performance measurement. She was told that the Governor issued an executive order declaring the Social Security Number (SSN) to be the unique identifier. People begin at birth to be connected to their SSN, and relate to the registrar through various programs; the plan is to extend these connections to other uses. Attention is being paid to confidentiality issues. Regarding performance measurement, they do not plan to evaluate medical outcomes of managed care for several years, but they are currently evaluating the organizational changes resulting from health care reform.
The Virgin Islands health department has an annual budget of $35 million. Dr. Michael described several of its funding streams and activities, including setting up a new immunization system that is linked to other systems including electronic birth certificates. Some federal support is specifically used for hiring of staff, including statistical staff, as well as for technical assistance and equipment purchase. Two-thirds to three-fourths of data collection, analysis and dissemination activities are funded by federal money. Data are not systematically used to inform policy development, and no overarching health plan has been devised since the 1980s.
Although improving data collection is a priority for Dr. Michael, she said others in her department seem not to recognize the need for data to provide and regulate adequate care. She lamented the political constraints and pressures on their work. She asserted that more money, equipment and staff are necessary but not sufficient conditions to yield data-driven decisions in the Virgin Islands; also needed is a paradigm shift in the way people think about quality data and their importance.
Thus, a basic gap is the lack of such a philosophy in the health department and the territory. The department also is fragmented and program- rather than client-focused. No systematic centralized data collection system is in place, data are incomplete, and there is duplication of efforts. Confidentiality concerns have stalled any solutions to the need for unique identifiers. Also, there are major gaps in staffing and in telecommunications capabilities.
Discussing data quality issues, Dr. Michaels cited the common occurrence with BRFSS that subjects terminate the interview midway through, resulting in incomplete data. Completeness is also the chief issue with vital statistics.
She said federal assistance is needed to help the Virgin Islands develop a culture that understands the collection and use of health data as a core function of the health department. Help is also needed in establishing a center for health statistics within the department, to promote centralization.
For his jurisdiction, Mr. Uele described the difficulties of collecting data and health information, stressing people's unwillingness to cooperate and share data as a major impediment. Many health professionals in his department are very knowledgeable and experienced, but getting data from them is "like approaching a dog to release a bone." The information system is very fragmented, and people do not know what information others possess. The most frequent problems are insufficient cooperation, inadequate communication, insufficient training, and duplicative or unnecessary data collection. A byproduct is that data are not used to inform action.
Among other things, Mr. Uele recommended that the RPMS (not MUMPS) be adopted, following wide consultation. Asked to comment further on the problem of people's unwillingness to share data, he stressed that requests for data must come from "the top" to be successful.
"Data collection on Guam is alive and well," according to Mr. Camacho. Most data collected are based on federal program requirements, plus vital statistics information and cancer and diabetes registries. Other disease-specific data are also being collected. Information is provided to legislators, who approve the health department's budgets. Guam has not yet introduced managed care, but is looking at it.
Mr. Camacho highlighted fragmentation and communication difficulties, such as the slow pace at which information travels, as major gaps. He favors standardizing information sharing rather than centralizing it, to avoid turf issues.
He referred back to Ms. Benner's remarks about discrimination against U.S. citizens, noting that it exists in Guam as it does in Puerto Rico, linked to "formula findings," despite the U.S. administration's stated desire to eliminate all barriers to access to health care. He observed that it makes sense to develop a stronger infrastructure now, while the incidence of HIV and AIDS is low.
CNMI has characteristics similar to Guam. A notable feature is that the population of Saipan has doubled since 1990 (mainly through immigration), and the infrastructure is struggling to keep up. As with other island areas, the population is young. Ms. Sablan, who directs the health planning and statistics office, described the structure of the public health system and recent innovations in information systems such as instituting U.S. standard forms for vital statistics. She faces challenges similar to those described in other areas, such as turf battles and inadequate equipment and staff expertise. But she concluded that "we have to go forward."
Mr. Ngwal said his jurisdiction has system-based problems similar to those described elsewhere, involving manpower, training and technical assistance. Health planning is one of the critical areas where help is needed in Palau, along with a good, networked computer system and training. He noted that much of the data that are gathered are rarely used other than to satisfy federal program requirements.
Dr. Iser observed that the Department has promised the Pacific Island jurisdictions to simplify its reporting requirements, and he made a "plea" that this happen, in cooperation with the South Pacific Commission and WHO and following their lead. Mr. Ngwal commented that the CDC/HRSA data investment strategy may provide a starting template. Dr. Iezzoni expressed hope that the next day's discussion would return to this priority.
Virtually all morbidities, births and deaths in one of FSM's four hospitals are recorded; in the outlying areas, the rates are lower. Mr. Elymore characterized the information system as good, but coordination and communication as poor. FSM is currently reforming its information systems, and also institutionalizing the decision-making process regarding what diseases and health indicators to collect and who is responsible for what. He expects standardization of definitions, data entry, and outputs, which are being accomplished with the help of SPC, WHO, and CDC, to be a major step forward.
He added that NCVHS could significantly help FSM at a very low cost, saying that “even $50,000 would help with the infrastructure.” Medical and vital statistics are isolated from federally-funded public health programs. One area in need of improvement is community understanding of the importance of registration; another is health professional training on the use of ICD-9 and ICD-10. In general, he described a situation in which there is no coordination among the agencies, and increasing demands for data raise the level of confusion among health care providers and lead to even less coordination of services. Disorganization and the status of the FSM economy are basic problems, and standardization would be very helpful.
Dr. Amaro followed up on the mention of ICD, and Mr. Elymore said they have no one to train staff for the transition to ICD-10. Subcommittee members noted that this is a widespread issue that warrants a uniform recommendation.
Mr. Elymore also commented on the tension between public health needs and confidentiality issues with respect to reporting of AIDS in the FSM, noting that five FSM residents with AIDS have been identified in Guam; but Guam refuses to disclose the identities of these individuals. The government and public health people in FSM believe "it is better to prevent" the spread of AIDS "than keep it confidential."
Subcommittee members questioned Mr. Elymore and others about the standard use of a universal patient identifier in FSM, CNMI and American Samoa.
Mr. Santos referred to the same system-based issues of manpower shortages and technical assistance needs as were described for other areas. He stressed, also, that many good things are occurring in the Marshall Islands, noting some of the revenue sources that fund local programs.
Vital records are mostly paper-based, and the Ministry is working to computerize them. Boston University, with some help from Queensland Institute of Technology, designed the national Health Management Information System (HMIS) database. It is a part of an ADB funded Health and Population Project for the Marshall Islands. We currently have the data management system in place and we expect HMIS to greatly improve and strengthen our capabilities.
There is currently no standard protocol for collecting data; thus, the past system has been disjointed. Mr. Santos noted that the main concern had been in accurate data used for decision making. For example, the last official Census was in 1988, and health planning since then has depended on forecasting. He stressed the need to evaluate data needs and programs in order to make the best use of limited funding and the crucial nature of data management in health planning and management for the future.
Before focusing on conclusions and recommendations, the group addressed a few remaining questions. At Dr. Takeuchi's request, the representative of each insular area reported on when the last census-type and/or community health survey was conducted in their areas. They also discussed what policy and program uses were made of the information. Although each area had unique challenges, some were common to all, notably their insufficient resources. Roylinne Wada of the Department of the Interior noted that there are ceilings on the funds allocated to the islands, and they are competing for funds and attention with U.S. states with much larger populations. Data gaps make it even more difficult to get attention. Also, some surveys (e.g., TANF) are too expensive for jurisdictions to participate in.
A question about the National Health Interview Survey (NHIS) led to a discussion of methodological issues. One report discusses the need to use key informants to gather sensitive information, a fact that makes the NHIS less feasible. Another constraint mentioned is some people's unwillingness to participate in lengthy surveys such as the NHIS. Dr. Takeuchi noted the value of involving those who would benefit most from the survey in its design. Dr. Montopoli said the National Health and Nutrition Examination Survey (NHANES) has been adapted for use in Pakistan, and this might be a good model. SAMHSA also has used community participation in its needs assessment surveys in the Pacific Islands, resulting in funding allocations. Mr. Ngwal commented that Palau needs a health planner able to interpret and use the data on mental health and substance abuse being reported every month.
Recalling Dr. Zamora's comments about the need to customize the BRFSS, Dr. Koo noted that SAMHSA has an interest in BRFSS data and this is an opportunity to integrate data collection and reduce fragmentation.
Other methodological issues mentioned were the problem of finding homes and population fluctuations due to in- and out-migration, a serious issue about which participants from both the Pacific and the Caribbean commented.
Regarding the forthcoming Census, Dr. Zamora asked for a recommendation that the same variables be included in the Census for both the mainland and the territories. However, Mr. Uele noted that many of the Census questions are not applicable to American Samoa, as a result of which "nobody pays any attention."
Mr. Handler reported that blank 2000 U.S. Census of Population questionnaires (complete count short forms only) will be made available to the public to pick up and take home to complete in public areas such as shopping malls and libraries. The Census Bureau will use software techniques to eliminate duplicate forms completed by the same person or for the same household, and to select respondents to complete sample long forms at a later date.
Dr. Iezzoni asked for comments and suggestions about vital statistics, and Ms. Freedman observed that the two basic issues are coverage and completeness. Again, each representative described the situation in his/her jurisdiction. Although they depicted diverse situations, the most common problem is completeness, for reasons that are particular to each area. Ms. Freedman commented that many of the problems described are also found in areas of the mainland U.S. -- an observation made several times by various people during this meeting. She noted the need for training, which became a focus of subsequent discussion.
Regarding the transition to ICD-10, Ms. Freedman observed that there are issues around 1) conversion training; and 2) post-classroom certification, technical assistance, and support. She proposed the establishment of a core group of analysts and coders who could interact and provide mutual support on an ongoing basis, to counteract the isolation they face.
The group agreed that at least in the short term, the federal government should target its efforts on very specific technical areas where expertise is needed, such as coding. As a long-term strategy, it was suggested that the departments or ministries of health in the jurisdictions could work with local colleges to train people in the basic skills needed in the health information infrastructure. Retention of trained people is another problem, as they are often lost to better- paying employers.
A big question is how to deliver training, given that NCHS and other agency budgets are not sufficient to cover travel costs. The group discussed this and related questions at length, looking at various options such as video taped instruction, CD-Roms, sending trainers to the field, and having people in the field come to the U.S. for training. Some participants described their agencies' training activities. Various models of training and technical assistance were considered, along with specific opportunities such as the new Internet-based Johns Hopkins certificate in public health.
Some collaborative problem-solving took place in the course of the meeting. For example, Ms. Wada suggested that the CDC epidemiologist stationed in the FSM could be better utilized for capacity-building and made available to other Pacific jurisdictions. Dr. Iser suggested some collaborative training efforts by HRSA, SAMHSA, and CDC. Mr. Handler suggested that his agency’s 12 area office statistical officers and 4 IHS headquarters statisticians might be made available to conduct short term (one to three weeks) of on-site training (data collection, processing, presentation, and analysis) in outlying areas.
Dr. Iezzoni observed that there are two foci for training: nosologists and coders, on the one hand, and analysts, on the other. Dr. Amaro commented that manpower is a cross-cutting issue; the needs in this area must be assessed, leading to possible recommendations. In addition to the personnel issue, there are systems issues about data quality and consistency. Mr. Ngwal added that the basic infrastructure must be in place.
Dr. Koo noted the related issue of fragmentation of systems and the need for integration, and she described CDC's efforts to build flexibility into its categorical funding and surveillance systems. Several major information systems will be integrated, in collaboration with the states. Dr. Zamora observed that although Puerto Rico is interested in this opportunity, there is no extra money for the integrated health information system and it must come out of existing budgets.
Dr. Montopoli noted the need to set priorities in considering the many recommendations concerning training and technical assistance. He suggested an investment guide process to help people think through what investments in information will be most effective.
Dr. Iezzoni returned to the subject of HIPAA, which provides standards for both public health information and health care delivery information. She noted the need for ways to educate and inform people in the territories about these standards, asking the participants what would be most helpful. Mr. Scanlon stated that HIPAA has the potential to "unravel the thicket of categorical programs" and reduce the fragmentation that is such a problem today. Dr. Zamora likened the talk about HIPAA, ICD-10 and Y2K to "crying wolf," and she called for a simple presentation of information on HIPAA.
Ms. Greenberg encouraged her and others to participate in the November NCHS/CDC workshop on the public health and health services research applications of HIPAA. The materials developed for that workshop are expected to be user-friendly. She also encouraged the Subcommittee to tie its recommendations to those of the former NCVHS Subcommittee on State and Community Health Statistics, because of the many links to state and community issues.
Dr. Amaro commented on the importance of having a truly international vision for the information infrastructure, and of being inclusive in thinking about training. She proposed that the Subcommittee develop a set of principles to underlie its recommendations to the Secretary.
Dr. Amaro proposed three principles, noting the kind of recommendations that could flow from them:
The recommendations in this area would involve capacity-building, including manpower development and training, rather than bringing in experts.
The idea here is to shift into a frame of mind seeking ways to build the insular areas into the Department's activities instead of viewing them as too far away. A possible recommendation is that the Secretary ask agency and program heads to address in their work plans how they intend to integrate the islands and territories into their public health and data initiatives.
Dr. Amaro also suggested that the Secretary develop a funding source to which islands and territories could apply for grants to help them address systems issues that they have identified. The idea is to have a mechanism for helping each region identify its own challenges and solutions and then develop capacity in health data systems.
This principle would suggest initiatives that seek to move away from consigning people in the islands and territories to secondary status.
Dr. Takeuchi and others spoke in support of these principles. Mr. Handler noted that the Indian Health Service is building the capacity of American Indian Tribes under the self- governance program to establish their own health status objectives and methods the Tribes will employ themselves to achieve these objectives. This might afford a model for similar initiatives at capacity building in the outlying areas.
The group pursued the idea of a funding source for special initiatives. Dr. Koo urged that there be a set-aside to avoid rewarding the best-written proposal rather than the most deserving projects. Dr. Zamora urged that the funding not be competitive, pointing out that even though its infrastructure is more developed than other insular areas, Puerto Rico still has pressing needs. Ms. Ward, speaking from years of experience in Alaska, stressed the need for an accountable authority able to mix, coordinate and allocate resources. The group favored the idea of a public foundation to which corporate sources such as AT&T could contribute.
Dr. Iezzoni said the Subcommittee would meet on September 17 to develop its recommendations, which it hopes to finalize and send to the Secretary in the Fall. In addition to endorsing the principles outlined by Dr. Amaro, members identified the following elements as possible recommendations:
Dr. Michael called for the inclusion of language specifying the uses of funding, because funds sometimes get rerouted. There was wide agreement among the representatives of the insular areas that a more basic problem than money shortages is the shortage of leaders with "buy-in" and a sense of responsibility for using resources wisely to develop information to solve health problems.
Ms. Ward described states' struggle with this issue, and the successful efforts to educate and train legislators, governors and county commissioners for public health leadership. This has resulted in a shift in the way they make decisions and use public resources. The group agreed that similar programs would be beneficial in the islands and territories, with funding possibly coming from the proposed grant program. Dr. Iser noted that the Asian Pacific Island Legislators is a relevant body in which to pursue such efforts. Mr. Uele and others also stressed the importance of sending the right person to meetings and workshops, and the group discussed how to identify "the true leaders."
Dr. Zamora pointed out that the islands and territories have accomplished a great deal with very limited resources, and these achievements should not be overlooked.
Noting that he had no funds with which to publish them, Mr. Elymore suggested that a U.S. agency periodically publish his country's birth and death statistics.
The group discussed ways of maintaining communication in the future. Dr. Iezzoni reiterated that the Subcommittee plans to submit a 10-page report with recommendations to the Secretary in the Fall. She assured the representatives that the Subcommittee would track the responses to these recommendations. She explained the Committee's advisory role with the Department and the good working relationship it has with the Data Council. Dr. Carter-Pokras noted that several people in the administration as well as the Pan American Health Organization had attended this meeting and would be able to act soon on the speakers' input. All agreed on the importance of continuing the relationships with the representatives of the insular areas. Their names and addresses will be circulated along with the minutes, which will go to all the speakers. The transcript is on the Committee's Website. Carolyn Rimes, the Subcommittee's principal staff person, was identified as the point of contact for future communications.
In conclusion, Dr. Amaro offered her personal thanks and those of the Subcommittee to all the representatives for sharing their experience and insights with the Subcommittee. Dr. Iezzoni echoed these thanks, added thanks to those who organized the meeting, and declared it adjourned.
I hereby certify that, to the best of my knowledge, the foregoing summary of minutes is accurate and complete.
/s/ Lisa I. Iezzoni November 30, 1998
Lisa I. Iezzoni, Chair Date
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PeterJohn D. Camacho, M.P.H. |
Joseph P. Iser, Ph.D. |
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Robert Davidson |
Denise T. Koo, M.D., M.P.H. |
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Amato Elymore |
Robert Mayes |
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Jill Feasley |
Noreen Michael, Ph.D. |
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Mary Anne Freedman |
Richard Miller |
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Michael L. Millman, Ph.D., M.P.H. |
Magdalena T. Sablan |
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Michael Montopoli, M.D., M.P.H. |
Jonathan Santos |
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Nick Ngwal |
Fale S. Uele |
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Beatrice Rouse, Ph.D. |
Ruth E. Zamora, Ph.D. |
10-20-98
12/4/98