Immunization Registries
What
are immunization registries?
Immunization registries are confidential, computerized systems that
track vaccines given within a state or community. Registries help ensure
that correct and timely immunizations are administered by consolidating
vaccination records from multiple providers, generating reminder and
recall notices, and providing official vaccination forms and assessments.
Immunization registries include a child's name; date and place of birth; names and addresses of parents or guardians; date of vaccination; specific type of vaccine(s) administered; and any complications or side effects from the vaccinations. Children typically are entered into a registry at birth or at the time of their first contact with the health care system.
Registries typically store information on children less than 6 years of age who have two or more immunizations administered according to recommendations by the Advisory Committee on Immunization Practices (ACIP) and the American Academy of Pediatrics (AAP). The AAP supports the use of immunization registries, as long as they are effective, reimburse providers for costs incurred while entering data, and offer patient and provider confidentiality (Pediatrics 1996; 97:927-928). In its policy statement, "Combination Vaccines for Childhood Immunization," the AAP recommends expanding and coordinating immunization registries to make information available to parents and authorized providers in a convenient and timely manner, while protecting confidentiality and privacy. Pediatrician participation in development and implementation of registries is encouraged.
Why
are registries needed?
Although the United States currently has high immunization rates for
preschoolers and the lowest disease levels to date, sustaining these
rates is not easy. According to the National Center for Immunization and Respiratory Diseases (NIP)
and the All Kids Count program, studies show that families are more
mobile than in the past, and approximately 20% of children visit more
than one provider by 2 years of age, making it difficult to accurately
assess immunization needs.
One
of the Healthy People 2010 national objectives is to increase to 95%
the proportion of children 6 years of age and younger who are enrolled
in a fully-operational, population-based immunization registry. By using
registries, health care providers can promote effective immunization
strategies
(eg, reminder/recall systems), while decreasing the resources needed
to achieve and maintain high levels of coverage. In addition, approximately
one in five US children has received at least one unnecessary vaccine
because of incomplete immunization records, wasting approximately
$26.5 million per year on vaccine costs.
Also,
parents do not always have complete information about their children's
immunization status, and providers often overestimate the percentage
of fully-immunized patients.
Registries help address these problems by maintaining accurate immunization
records and identifying children in need of vaccines so they can be
called back to the health care provider's office.
In addition, registries keep providers informed of new vaccines and
changes in the recommended schedule.
What are the benefits of immunization registries?
Registries increase and sustain high vaccination coverage by helping
health care providers consolidate and maintain computerized immunization
records on each child. This helps providers and parents determine when
immunizations are due and ensures that children do not receive unnecessary
immunizations. Registries also benefit families by ensuring that children's
immunizations are up-to-date; promoting timely immunization for children
whose families move or switch health care providers; and eliminating
duplicate record-keeping.
Registries help providers fulfill school, camp, and child care immunization requirements; reduce paper work and office-based computer entries; introduce new vaccines or changes in the vaccine schedule; and generate Health Plan Employer Data and Information Set (HEDIS) reports for managed-care organizations. Registries also advise health care professionals about recognized contraindications and promote the most current recommendations for immunization practice. Furthermore, registries reinforce the concept of the medical home by helping to ensure that children receive health services by well-trained physicians in a coordinated, comprehensive, and qualitative manner.
Registries help communities by preventing disease outbreaks; identifying high-risk and underimmunized populations; and providing information on community and state coverage rates. Registries also help public health officials provide information about areas in need, target interventions, develop resources; introduce new vaccines or changes in the vaccine schedule; and integrate immunization services with other public health functions, such as newborn and lead screening.
What
are some concerns about registries?
Following are some challenges to consider when implementing and maintaining
immunization registries:
Cost to implement. Many providers are concerned about the cost involved in implementing registries. According to the NIP, however, the cost for a provider to manually retrieve, review, and update immunization records is three times the annual cost of maintaining a child in a registry until 5 years of age. Other cost-saving benefits include: reducing "no-show" rates (through the use of reminders); reducing vaccine wastage; and avoiding part or all the cost of the National Immunization Survey (currently the primary method for assessing community coverage levels).
Time involved. Purchasing adequate software, training staff, and ensuring that technical support is available can be expensive and time-consuming. Although entering records into a new system takes time, once the registry is in place, the need to manually search for records will be eliminated.
Provider commitment. A lack of patient data often is a problem when starting registries. Having a fully functional registry requires the participation of health care providers and a willingness to gather relevant information.
The cost and staff time involved in implementing and maintaining registries is significant. To counteract these concerns, providers should work together to develop a system that is user-friendly and consider the long-term rewards of immunization registries.
Are
registry records confidential?
The information stored in registries is confidential, and the privacy
of all users (including children, families, and providers) is protected
by law. Many
states dictate how registry information can be used and have strict
rules about privacy.
The Centers for Disease Control and Prevention (CDC) has developed the
following specifications to protect the privacy of registry users and
confidentiality of registry information:
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Confidentiality Policies and Agreements. All registries must have a written policy that is consistent with applicable federal, state, and local laws and regulations, and all users must sign an agreement to comply with written specifications.
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Notification and Choice. Parents must be notified of the registry's existence, the information it will contain, and how the information will be used. Parents also must be informed about participating in the registry.
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Use of Registry Information. Registry information must only be used for its intended purpose and not in a punitive manner.
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Access to and Disclosure of Registry Information. Policies must clearly define who has access to registry information.
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Penalties for Unauthorized Disclosure. Policies must define what constitutes a breach of confidentiality, and penalties must be enforced.
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Data Retention. Policies must address the length of time registry information will be held.
Where
can health care providers find more information about registries?
The CDC National Center for Immunization and Respiratory Diseases Registry Clearinghouse (IRC) serves to collect, merge, and
distribute information about immunization registries and maintains information
on registry participation; privacy, confidentiality, and legislative
issues; technical development; and guidance and registry funding. For
more information about immunization registries, please contact the IRC
at 800/799-7062, or visit their Web site at http://www.cdc.gov/nip/registry/Default.htm.
The IRC also has an electronic mailing list open to anyone interested in discussions related to registry development and maintenance. To subscribe, send an e-mail to listserv@listserv.cdc.gov, with SUBSCRIBE IMM-REG in the first line of the body of your message.
CDC Releases 2005 Update on Immunization Information System Progress (Exit Site)
Additional
Resources:
All Kids Count - www.allkidscount.org
Every Child by Two - www.ecbt.org
Immunization Action Coalition - www.immunize.org
American Immunization Registry Association - www.immregistries.org
The American Academy of Pediatrics Childhood Immunization Support Program, in partnership with the Centers for Disease Control and Prevention, seeks to improve immunization delivery practices, establish a national network of providers that promote uniform implementation of best immunization practices within the medical home, and raise immunization rates in children across the nation.