Good morning, my name is Brad Tait and I am the Chief of the Division of Data Processing with the Illinois Department of Public Health. I am pleased to be here this morning to provide information on issues relevant to the development and standardization of data for immunization registries at the state level. I have been with the Department for five years and have more than twenty years experience in data processing, most of which has been with large scale statewide systems. This morning I would like to provide a brief overview of the status of the registry in Illinois drawing contrast between the implementation in the public sector and the private sector, and describe our experience with utilization of standards in data collection and exchange.
The Illinois Department of Public Health is a strong proponent of and is committed to establishing a statewide immunization registry. The Department is currently at the midpoint of its goal with the recent completion of the public sector implementation. The registry contains about 50% of the State’s immunization events with 250,000 children under the age of two registered, 1.7 million total participants and 7.8 million shot records on file.
In 1993, in response to issues surrounding non-linked maternal and child health systems that had been developed with a categorical focus, a massive effort to develop and deploy an integrated system called Cornerstone was undertaken by the Department to serve the State’s public health community. This project replaced a WIC system developed in 1989 and incorporated both a Family Case Management and Immunization component. The system is personal computer (PC) based and is tied together at each location by a Local Area Network (LAN) and currently utilizes a dial-up file transfer process on a nightly basis. It is installed in more than 270 locations in the State including all Local Health Departments as well as Community Health Centers and Community-based Organizations with WIC contracts.
In this setting, with custom developed software deployed and managed by the state, control over data definition and content is well established. Integration of the Immunization component with WIC and Family Case Management provides a useful tool for the public health community and the system has been well received and heavily utilized. There are however, some Local Health Departments and Community Health Centers that had pre-existing immunization data bases contained either in purchased clinic management software or in locally developed systems. In these cases, the data bases are typically linked to billing systems and therefore the immunization data is entered into local billing systems rather than the state supplied system that populates the registry. The existence of localized data bases undermines the goal of a true population-based registry and creates the need for electronic interfaces to these systems.
In 1996 an effort was initiated to incorporate immunizations given in the private sector into the registry. With the existing system having been developed to support public health, entirely different strategies had to be employed to address the private sector. The State does not have enabling legislation that mandates participation and utilizes an informed consent approach to registry participation. In order to reach as many providers as possible and present variety of options for participation, an aggressive strategy has been adopted to utilize multiple technologies for data collection and dissemination. These technologies include; Electronic Data Interchange (EDI), Fax Servers, Voice Response Units (VRU), Optical Mark Recognition (OMR) as well as a PC-based software package that was developed within the Department. Some components are currently in pilot and others will begin in the second quarter of 1999. An estimated 50% of the State’s private immunization providers are currently registered to participate.
Various technologies were researched, acquired, and implemented to enable non-computerized providers to receive and communicate immunization information to the registry.
Voice interaction or Interactive Voice Response (IVR) will allow access to data via the phone. By stepping through a voice menu, a provider can have a printed immunization record or a State mandated school physical form for a specific client faxed to them at their local fax machine. Additionally, the voice system will be utilized to generate phone calls to remind parents or guardians of upcoming or missed immunizations.
The immunization information for a patient that is faxed back to the provider contains demographic data on the client that is both printed and bar coded, the shot history, shot forecast and coded fields for shots given. These coded fields are marked and the form can then be faxed back to the Department and software automatically scans the incoming fax reading the bar code to identify the patient and using optical mark recognition to record the shots given. The registry data base is then updated with the new information.
The Illinois Department of Public Health had long recognized the need for a standards-based ability to exchange data electronically with the diverse and numerous partners in the public health system. With more than 170 state and federal programs to administer, the Department collects and exchanges information with laboratories, hospitals, long term care facilities, local health departments, county and city governments, private physicians and many other entities. The administration of these programs and the data collection to support them is often hindered by fragmented manual and paper collection processes, multiple transcriptions of information and duplicate data entry.
Ideally, there would be electronic data interfaces among all of these participants in the public health system. The interfaces would allow for seamless exchange of data, eliminate redundant reporting either by paper or electronically and lower the cost of data capture by collecting information a single time at the point of origin and then electronically routing data to the appropriate destinations. This scenario would improve the timeliness and compliance with required reporting of public health events and provide for a near “real time” public health surveillance system.
It was readily apparent that adopting national standards for electronic data interchange (where they existed) was the only practical means of moving toward this ideal environment. Customized electronic interfaces with each individual partner are expensive to construct and maintain. With the number of entities in the public health domain, anything less than a standards-based approach is unmanageable. With these issues in mind, the Department evaluated, selected and implemented an EDI interface engine to support both ANSI and HL7 standards.
The initial use and pilot of the interface engine and HL7 at the state level focused on the immunization registry using an HL7 transaction standard developed by The Centers for Disease Control and Prevention for the exchange of immunization data. In August of 1998, the Department successfully exchanged the first HL7 based EDI immunization record with the state of Georgia.
Once the infrastructure was established and the capability to exchange standards-based records was tested, efforts were initiated to extend the pilot to target partners with existing local immunization data bases.
It was apparent early that the HL7 standard as developed did not go far enough to eliminate the problem of customization for each interface or partner. After exchanging the first record with Georgia, a second test was conducted with the state of Arizona where a Z segment or user defined segment had been utilized to contain additional information in the HL7 transaction. The template developed in the interface engine then had to be modified and stored as a second template to accept data from Arizona. With hundreds of potential partners, the problems associated with maintaining multiple interfaces are nearly the same as those mentioned earlier for customized interfaces between systems.
The standard as it existed, addressed the structure and format of the transaction but left the content somewhat open to interpretation. Further work was done and continues with several states and the CDC to clarify the standard and create guidelines for its use.
Discussion with local health departments and community health centers that utilize clinic management software products reveals a lack of readiness or capability to support EDI transactions and standards. In the case of the new HL7 transaction for immunization records, systems have to be modified at a cost and time commitment that individual partners have difficulty meeting. To improve the opportunity for success, continued efforts such as those underway with the CDC, software vendors and public health agencies to make the standards as clear as possible and develop guidelines for their use must continue. With this type of synergy, software vendors will be more inclined to include the necessary functionality within their products.