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Fall 1999 Providers of immunizations across the country generally agree that a nationwide network of immunization information systems, or registries, is needed to ensure that our children are protected against vaccine-preventable diseases. The critical question is not whether we should have immunization registries, but how to go about it. Issues of privacy and confidentiality, technology, resources and how to ensure participation of private providers and managed care must be addressed if registries are to be embraced by health care professionals and the public. Registries Tackle Tough Issues Locally and Nationally Communities, states and local public health jurisdictions that recognize the importance of an immunization registry to improving their immunization rates have been pushing ahead since 1992 with development of local registries. Not surprisingly, given the heterogeneity of health care delivery systems across the country, registries themselves are highly diverse. From the existence of legislation supporting the registry and protecting privacy, to the involvement of its stakeholders or the type of hardware and software used, each registry reflects its own community's needs and values. As registries develop, they are learning from one another about what works best and what doesn't work in different social, economic and health care delivery environments. All Kids Count projects have been instrumental in facilitating the replication of registry "best practices." Yet all of the more than 250 developing immunization registries nationwide are grappling with critical questions: How do we balance the need to protect the privacy of registry participants with the need to share information? How do we protect data from unauthorized use? Who should provide the resources to sustain an immunization registry? Should there be national data standards? How do we ensure and sustain provider participation? And finally, How do we develop a nationwide network of registries? In response to a presidential directive to the Secretary of the Department of Health and Human Services, an Immunization Registry Initiative was launched this year to develop a national plan for a network of local or state-based registries, all able to exchange information when needed, all able to integrate with health care delivery systems, and all supporting essential public health functions. The national registry plan's recommendations will draw extensively from testimony provided at public meetings held earlier this year on four key registry issues: privacy and confidentiality, technical and operational challenges, resources, and ensuring private provider participation. The Secretary is expected to issue a call to action by the end of this year. Look for updates on the National Immunization Registry Initiative in future issues of this newsletter, or check the CDC's Web page at http://www.cdc.gov/nip/registry.
On the Registry Frontier All Kids Count Projects Pioneer Immunization Registries When The Robert Wood Johnson Foundation (RWJF) launched All Kids Count in 1991 in response to the 1989-90 measles epidemic, only a few communities or states were developing immunization registries. Today registries in communities and states across the country are building on the pioneering efforts of All Kids Count projects. And with the call for a nationwide system of registries, the demand for information about how to develop registries is expected to escalate. Since 1992, RWJF has awarded more than $20 million in grants to develop immunization registries that will help increase the number of children immunized against vaccine-preventable diseases. In Phase I of All Kids Count, 15 projects received awards from RWJF in a competitive grant process. Five other foundations joined in the effort, funding an additional nine projects, for a total of 24 projects. Phase I was completed in October 1997. Although at the close of 1997 registries were still working toward becoming fully operational, RWJF remained confident that community-based registries are the key to ensuring the timely immunization of children in this country. In All Kids Count Phase II, RWJF funded 16 projects in 15 states to complete their registries by January 2000. Challenges to these registry demonstration projects are many and complex, yet their prospects are strong. In these pages, we report on the progress of registries in communities nationwide and the ways that All Kids Count registries are working in partnership with the public and private health care sectors to make them successful.
What Registries Do: When fully operational, immunization registries perform five basic functions:
Registries also may be used to:
Why Immunization Registries? With immunization rates now at an all-time high, it's easy to forget devastating events like the measles epidemic of 1989-90, when 120 people, mostly infants and young children, died because we relaxed our guard. But even today, we're short of the Year 2000 goal of 90% of 2-year-olds fully immunized. The National Immunization Survey showed that nationally, 78% of children aged 19-35 months in 1997 had received a 4:3:1 vaccination series, and 76% had received a 4:3:1:3 series. Lack of a system to monitor immunizations puts our children at risk. We know that keeping records straight is becoming increasingly complex. Children today need 16 or more immunizations before school entry, and many more new vaccines and vaccine combinations are under development. Families are increasingly mobile; they frequently change health plans or providers. As a result, many parents don't know their children's immunization status and studies show that physicians often estimate their immunization coverage to be higher than the actual rate. Immunization registries that keep track of this information can help ensure our children are vaccinated on time. Reminders and Recalls Registries Bring Kids "Home" The reminder/recall function of an immunization registry can bring patients who receive health care in more than one place back to their medical "home." Private providers rank this function among the most valuable of the services a registry provides. Reminders of immunizations due and recalls when they are overdue take many forms, including direct mail postcards, autodialers, personal calls or home visits, all in a family's primary language. Some registries assume responsibility for sending out the reminders and recalling patients, while others furnish providers with the information they need to send the postcards or make the calls themselves. Outreach workers may be enlisted by the registry or provider to make personal contacts with overdue clients. In San Bernardino County, CA, for example, the San Bernardino Immunization Tracking System (ITS) sends each client who is due or overdue a postcard personalized with his provider's name, clinic hours and phone number. Providers receive detailed lists of postcard recipients. The Oklahoma State Immunization Information System (OSIIS) also mails computer-generated postcards to overdue patients for almost 400 public and private clinics. In Philadelphia, where outreach into communities with low immunization rates is a priority, the KIDS registry identifies children who are late for immunizations and then progresses through increasingly intensive stages of outreach. Community-based outreach workers make telephone calls, visit the child's last known address and attempt to reach them at their new address. If the guardian does not have a copy of the child's immunization record, the provider is contacted, and if immunizations are required, the outreach worker works with the family to bring the child to medical care.
The User-Friendly Registry Low-tech Solutions Assist Providers Simply put, the more data in a registry, the more effective it will be for all providers. Thus, with approximately 70% of children nationwide now receiving their immunizations from private providers, a registry's effectiveness depends on prompt and comprehensive reporting of immunization data from all providers in a community. Yet providers and office staff who are unfamiliar with how a registry works may be reluctant to participate in a registry because they are under the impression that a computerized registry means more work, interruptions to the flow of patients or learning about complicated technology. All Kids Count immunization registry projects work with the providers in their communities and states to develop effective, efficient and user-friendly methods for reporting data, and assist providers and their office staff in making the transition to online reporting. Faxes, Phones and Bar Codes Many registries offer providers alternative "low-tech" methods for reporting and retrieving data. These include easy-to-use methods such as faxes, mailed written reports, voice response or touch-tone phones. In addition, some registries are developing interfaces with existing medical billing systems. In Oregon and Rhode Island, for example, providers reporting to the state registries can choose to attach peel-off bar code labels to the record, then mail it to the registry to be scanned into the database. In rural southwestern Minnesota, where some provider offices are not yet computerized, immunization histories are submitted through the mail and data for new patients are retrieved over the phone. Those providers who can use the Southwest Minnesota Immunization Information System software can report data on a floppy disk that is sent to the registry monthly. Similarly, in New York City, which has over 125,000 births annually, providers report historical data on paper. While low-tech methods facilitate reporting for some provider practices, they don't have the features of online solutions developed specifically to securely and accurately report immunization data. A computer online with the registry also can automatically generate reminder/recall, HEDIS reports and school/camp forms; flag potential contraindications; control vaccine inventories; and more. Making the Transition All Kids Count registries work closely with individual providers' offices that are making the transition to a computerized registry. For each new registry participant, staff at the Santa Clara County, CA, Immunization Registry Information System (IRIS) analyze current patient flow and recordkeeping work flow, assess existing hardware and software, and review the office staff's roles. IRIS staff then make a formal, written recommendation to improve work flow and integrate recommended hardware and software with any existing systems. Extensive training is matched with individuals'' computer skills and workloads. Once the provider is online, IRIS staff continually assess the practice's additional training and support needs. Anjali Kausar, office manager for two practices in Santa Clara County, says that the registry has made going online easy. IRIS installed the software, loaned them hardware and entered immunization histories. No major changes to office procedures were required. Office staff, she says, are excited about computerizing this aspect of the practice because it eliminates paperwork.
Perspective: Partners in Our Children's Future All Kids Count's experience with immunization registries shows that long-term support of registries is a top concern for providers, insurers, and state and federal policymakers. It's ours, too. In addition to funding from The Robert Wood Johnson Foundation, All Kids Count projects rely on funding from a variety of sources, including federal, state and local agencies, and other private foundations. But as recognition of registries' value has grown, new and creative partnerships for funding registries have emerged. Managed care organizations (MCOs) and state Medicaid programs recognize immunization registries' ability not only to prevent disease, but also to measure and document quality. MCOs and Medicaid programs recently have begun to figure as prominent sources of funding for registries. Five managed care organizations in Connecticut, for example, have contracted with the Connecticut Immunization Registry and Tracking System (CIRTS) to collect and report immunization data for children enrolled in their Medicaid managed care plans. Blue Care (Anthem Blue Cross and Blue Shield), MD Health Plan, Physicians' Health Services, Kaiser Permanente and Community Health Network of Connecticut all contract for various report options with different costs. In Oregon, Oregon Health Systems in Collaboration (OHSIC), a collaboration of the six largest health plans and clinic systems in the Portland metropolitan area, funds 54% of the annual operating budget for the Oregon immunization registry, Oregon Immunization ALERT. The contribution of each - Providence Health System, Regence Blue Cross/Blue Shield of Oregon, Kaiser Permanente Northwest, Adventist Medical Center, Legacy Health Systems and Oregon Health Sciences University - is based on market share in the area. An additional 13% of the budget is picked up by the Oregon Health Division and 33% is contributed by the Oregon Medical Assistance Program. The percentages reflect the proportion of children who are insured, uninsured or covered by Medicaid, respectively. The federal Health Care Financing Administration (HCFA) is an important partner in funding ImmPact, the joint registry for Maine and New Hampshire. HCFA paid for one-third of the development of the registry, reflecting the proportion of children on Medicaid. Providers in those states will reap multiple benefits from this partnership. In addition to the core immunization registry functions, ImmPact will provide reminders of periodic recommended screening examinations and tests for Medicaid children. Providers will use the registry's Web-based technology for Medicaid claims processing from their offices. All Kids Count applauds these innovative partnerships We encourage other public and private organizations concerned about our children's health to share in the support of registries. 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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