Presentation - Registry Update 2000

Diane Simpson MD, PhD
Robb Linkins PhD
Terry Boyd

Slide 1: It is hard to imagine modern life without the assistance of computers. We need only think about our trip here to the NIC to see how important computers are to management: your bank teller or Automatic Teller Machine knew immediately whether you could withdraw the funds you requested; the airline knew whether you had a ticket for a specific flight, to which seat you were assigned and whether you could change your plans without penalty; and the hotel knew whether you had a reservation, which size and how many beds were requested and whether you preferred a room for smokers.

So why is it, when a small child presents for an immunization that providers most often must rely on a parent maintained card or a cumbersome paper medical record?

It is not because a data base of vaccination records - an Immunization Registry - is a new concept only recently introduced.

Slide 2: Delaware established a registry based on encounter data in 1974.

In 1980 the Automated Immunization Management System was developed.

Not shown on the slide is that San Antonio established their mainframe based registry of vaccinations given in the public sector in the mid 1980s.

A national panel recommended a national registry in 1991.


Slide 3: Although the concept evolved to a system of state based registries, as shown in slides 2 and 3, activities and funding picked up during the 1990's and culminated in a Health People 2010 goal to have 95% of children under the age of 6 years in a population based immunization registry.

What was accomplished in these 10 years of increased activity? Primarily state and local health department based immunization registries began Phase I, Slide 4, that is they began to lay the necessary political and legal groundwork and to build the systems.

Slide 5 is list of tasks necessary for population based immunization registries. The first 4 tasks have been well underway and are or are near completion. These include developing the necessary hardware and software, establishing necessary laws and/or rules for implementation, developing a consensus on standards for privacy and confidentiality, and establishing the technical standards necessary for well functioning immunization registry.

The functional standards proposed by NIP’s technical advisory group and accepted by NIP and the number of project based registries that have met the standards in 1999 and then in 2000 are shown in Slide 6. Thirty-eight population based registries evaluated themselves on these standards. You will note the improvement in one year on the number projects that stated they met the technical standards especially with de-deduplication of records, security and confidentiality measures and the ability to recover lost data. Only one standard, National Vaccine Advisory Committee’s (NVAC) list of core data elements that should be part of each child’s registry record, appears to have decreased in the number of registries that stated they met standards. This apparent loss of quality is due to a change in the list of core data elements that were sent to the states and may not reflect a real loss of data quality.

It is the last necessary tasks to fully implement registries that we are most lacking - enrolling providers and children into population based registries.


Slide 7 shows by state what percent of the pubic sector providers have been enrolled in registries,

Slide 8 shows, again by state, the percent of private providers enrolled and

Slide 9 provides state data on the percent of children under age 6 who have at least 2 immunization visits recorded in a population based registry. Overall in the U.S. in the year 2000 only 22% of children under age 6 have 2 visits recorded; an unknown but even smaller percent of these children have their entire vaccination history accurately recorded in their Health Department’s immunization registry.

It is clear that the maxim "If you build it they will come" may work as part of a plot for a movie, but does not necessarily work with immunization registries. Instead we must adopt new approaches and adapt current practices if we are to reach our goal of enrolling 95% of young children into a registry by 2010. We must move into Phase II.

Slide 10: In order to reach the Health People 2010 goal we must begin to think strategically, work cohesively and implement creatively.

Slide 11: The Data Management Division’s Systems Development Branch at NIP will lead the effort over the next several months to develop a national strategic plan with realistic goals, a means to discern best methods, and measure achievement.

Also to recognized is that our task of building a system of state registries rather than a national database of vaccination histories requires that we all work together in the development, implementation and assessment of the success of this strategic plan.


Slide 12: The groups involved with immunization registries certainly include state and local health departments. But in addition, national organizations such as the American Immunization Registry Association (AIRA) and the not-for-profit organization, Every Child by Two (ECBT) are also important to the success of registries. A good example of groups working together is the development of the technical standards for registries.

Finally we must learn to sell our product. We must demonstrate time and again the need and usefulness of computerized vaccination data. It is admittedly difficult to sell a product in the early stages of its development but it can be done if we think creatively.

Slide 13: Two examples of selling creative implementation are the ECBT awards given each year at the annual Immunization Registry Conference and the newly established of "sentinel site registries". Last year the Oklahoma and Arkansas registries were chosen as the best examples of creative use of registry data. Arkansas was able to use their registry to recall children who had received doses of vaccine that were not valid and Oklahoma used their data to assess the uptake of inactivated polio vaccine in place of oral polio vaccine.

The Sentinel Site registries are established systems that are able to capture almost completely the vaccination histories of a segment of their young child population. These subsets of the population can then be used to estimate vaccination coverage and evaluate specific questions regarding vaccine uptake.

Slide 14 shows the location of the 8 registries that have volunteered to become sentinel sites and lists the populations that will constitute the sentinel population at each site. Some early data from these sites should be available at the annual Immunization Registry Conference in July.

In summary, much time and effort has already been put into building immunization registries. Now we must devote ourselves to implementing the registries by showing providers and parents that registries can serve a useful and beneficial role in the health care of their children.