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Spring 1999 Parents like the convenience that immunization registries provide by keeping all records in one place. At the same time, they want information to be shared only with health care providers and schools, and they want to have access to the registry information so that they can ensure it is accurate. Above all, parents liked the centralization of records, although they did not see the registry as a substitute for keeping immunization record cards. Parents noted that immunization registries would help them receive timely reminders about vaccines and would decrease the chance of lost records or administration of duplicate vaccines. Parents as a whole recognized the value of immunizations and expressed support for anything that would increase the accuracy of their records and decrease the amount of work on their part, such as obtaining immunization information for school entry. Many had concerns that other information, such as addresses and social security numbers, might be shared. They wanted to know who would have access to information, and how it would be adequately safeguarded. Some did not want their children automatically included in a registry, but they indicated that they probably would not 'opt out' if they understood exactly what information was in the registry and who would have access to it. Most said that their doctor's opinion would influence their decision to participate. Focus group participants were probed for their thoughts on privacy and confidentiality. Some immigrant health group advocates have expressed concern that registries might further marginalize under-served populations, including immigrants, migrants and Hispanic families. The focus groups, however, revealed that compared to other ethnic groups included, Hispanic groups found great value in registries and were more open to allowing a wider variety of individuals and organizations to have access to the information in the registry. The focus groups were conducted by Westat, Inc., on behalf of the Centers for Disease Control and Prevention (CDC), National
Immunization Program. Groups included parents of different racial/ethnic and education backgrounds, including African- Americans, Hispanics, Asians, whites and Native Americans.
Groups were held in eight different locations: Ankeny, IA; Rockville and Baltimore, MD; Tucson, AZ; Tulsa, OK; Portland, OR; Pasadena, CA; and Miami, FL. A Nationwide Network of Immunization Registries Recommendations for developing a nationwide system of community- and state-based immunization registries that will help
to sustain the nation's high immunization coverage rates were approved by the National Vaccine Advisory Committee (NVAC) in January. NVAC drafted the document, guided by public testimony
of experts gathered over the last year and parent focus groups. The report will be sent to the Department of Health and Human Services in April. Registry Research What a registry takes The report on their findings, issued last fall, captures the progress, obstacles and lessons learned about the development of 19 All Kids Count immunization registries. The evaluation tracks the progress of individual projects to identify factors that promoted or detracted from success, as well as progress in the aggregate. It identifies key steps and tasks involved in establishing an immunization registry and how to best accomplish them; important factors that support establishment of a registry; and challenges and pitfalls to avoid. The Sheps Center is conducting two major studies of registry systems during All Kids Count II. The first examines private provider awareness of and participation in immunization registries. It will look at why providers participate and the impact of registry participation on their practices. Change over time will be assessed, as will the impact of registry methods and incentives on provider participation. Similarly, the study will look at health plan administrators' knowledge of registry development and the impact of plans' policies/practices on members' participation in registries. The second study will examine the use of reminders and recalls by registries and private providers, and their helpfulness to parents. Measuring progress To order the All Kids Count National Program Evaluation Project Report, Implementation Year Four: November 1, 1996 - October 31, 1997, call 919-966- 6168. Public and Private Provider Enrollment in All Kids Count Projects How Much? A key question facing communities and states as they launch their registries is, "How much will it cost?" Because registries are so new, the data are scarce. The All Kids Count National Program Office in 1998 conducted a cost study of its 16 projects. It showed that the average annual cost of a fully operational registry was $3.91 per child, or a projected annual national cost of $78 million to maintain immunization registries for all children aged 0-5 years. The study's results are expected to be published later this year. The CDC's National Immunization Program also conducted a study of costs, based on three registries, in 1998. Preliminary analysis indicates that the annual cost of a fully operational registry ranged from $3.38 to $6.15 per child. The projected annual national cost for registries to include all children aged 0-5 years ranges from $67.6 million to $123 million. The national cost is anticipated to be offset by the costs of manually pulling records for school entry or HEDIS requirements. Additionally, savings are expected from reduced over-immunization and reduced vaccine spoilage as a consequence of better vaccine inventory. Registry Legislation Laws' impact closely examined Do these laws or regulations make establishing registries any easier or faster? Do they increase immunization rates? It's too soon to tell, say experts studying the laws' impact. "Most of the laws have been in effect only a short time," says Gail Horlick, MSW, JD, of the CDC's National Immunization Program. "In some cases, the registry is not up and running. In others, laws and regulations mandating reporting are not yet being enforced." A 1997-98 survey of immunization registry-related legislation conducted by the NIP revealed four primary reasons that states and cities developed legislation or regulations to support registries: to provide clear legal authority for the registry; to address concerns about liability and consent; and to ensure greater provider participation. Laws' effects on providers Another All Kids Count project, Oregon Immunization ALERT, also had high private enrollment during that period. In that state, 92% of private providers had enrolled in the registry without legislation mandating reporting, and 65% had submitted immunization data. All Kids Count will be keeping close watch on the impact of legislative efforts, as well as other forces influencing provider participation, in the communities and states where All Kids Count projects are based.
Perspective Making Medical Homes Real The concept of the medical home sounds so simple: Every child has a single provider who is the point of first contact; who facilitates all aspects of care Ð preventive, screening, diagnosis and treatment; and when necessary, refers to other providers. The medical home assures that care is always accessible, affordable, continuous and comprehensive, and finally, that it's coordinated to meet the health needs of the child and family being served. But the reality is not so simple. Families' lives are complicated: They move, they change jobs, they change insurers, they change providers, and sometimes, children actually change families. The result is that frequently nobody has the complete picture of a child's medical care. We're making some progress against this fragmentation of care, but what we need is a systematic, organized way of looking at each child's health needs and care, in a way that benefits the provider, the child and the family. The immunization registries now in development across the country have that potential. In Rhode Island, for example, the immunization registry called KIDS NET now links eight formerly separate pediatric databases. The system is designed so that, with a single search on a computer screen, a private provider in that state can obtain information about a child's immunizations, as well as newborn screenings (developmental, hearing, metabolic), early intervention, lead testing, and WIC enrollment. In addition, KIDS NET helps providers deliver services to hard to reach children who are at medical risk or who are behind in preventive care through a home visiting program. The system can also remind families about well-child visits, screenings or immunizations due. The detailed information that registries can provide about a child's health is being used in many cities to ensure that children do not lose contact with a medical home. Both the Philadelphia Kids Immunization Data System (KIDS) and Baltimore Immunization Registry Program (B.I.R.P.) use outreach workers to bring children identified as immunization-delayed back to their medical homes through a combination of letters, telephone calls, home visits, transportation, insurance assistance - whatever it takes. Children and their families, their communities and health care professionals all stand to benefit from systems that can connect them to the whole spectrum of preventive care. Immunization registries are one of the best tools we have for ensuring a medical home is a reality for every child. If you would like to be added to the mailing list for future issues of the print version of Focus On Immunization Registries, please suscribe here. Back to Registry News & Information
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