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Report covers surveillance, confidentiality
The Centers for Disease Control and Prevention in Atlanta has recommended in guidelines released in December that all states and territories conduct case surveillance for HIV infection.
The CDC report also includes revised case definitions for HIV infections in adults and children younger than 18 months of age. It also has recommended program practices and performance and security standards for HIV and AIDS surveillance.
Here is a brief summary of the CDC’s AIDS surveillance recommendations:
• States and local programs should collect standard sets of surveillance data for all HIV and AIDS cases, including the following:
— patient identifier;
— earliest date of diagnosis for HIV infection;
— earliest date of diagnosis of an AIDS-defining condition;
— demographics, such as date of birth, race/ethnicity, sex, and residence at diagnosis;
— facility of diagnosis;
— date and place of death.
• Name-based HIV/AIDS surveillance systems are the most likely to meet necessary performance standards, and states should use the same name-based approach for HIV surveillance as is used for AIDS surveillance nationwide.
• HIV or AIDS surveillance should be used to identify rare modes of HIV transmission.
• HIV-infected people who are tested anonymously should be reported to HIV/AIDS surveillance only after they have been diagnosed by a health care provider and have test results that meet the reporting criteria.
• State or local programs should regularly publish HIV and AIDS surveillance data.
• Surveillance programs should conduct regular, ongoing assessments of the performance of the surveillance system.
• Surveillance systems must use reporting methods that provide at least 85% of case reporting with at least 66% within six months of diagnosis and have no more than 5% duplicate case reports. At least 85% of cases should have HIV risk information after epidemiologic follow-up is completed.
• Surveillance programs must conduct periodic evaluations that include the use of at least one appropriate population-based data source, such as the National Death Index, that is not used for routine case finding.
• The CDC will assist states conducting HIV and AIDS surveillance to evaluate current performance levels, institute revised program operations and policies as necessary, and reassess performance.
• The CDC requires that electronic HIV/AIDS surveillance data be protected by computer encryption during data transfer, and paper or unencrypted electronic case reports should be used to update the surveillance registry and then destroyed.
• The CDC requires that HIV and AIDS surveillance records be located in a physically secured area and that they be protected by coded passwords and computer encryption.
• The CDC requires that access to the HIV/ AIDS surveillance registry be restricted to a minimum number of authorized staff who have been trained in confidentiality procedures.
• If states develop databases from cross-matching of HIV/AIDS surveillance data with other surveillance data, the HIV and AIDS records must not be used if the cross-matched databases do not have equivalent security and confidentiality protections.
• Appropriate institutional review boards must approve the use of HIV and AIDS surveillance data for any research purposes. States should make sure the release of data for statistical purposes does not result in direct or indirect identification of people reported with HIV and AIDS.
• States must investigate potential breaches of confidentiality and impose personnel sanctions and criminal penalties as appropriate.
• States should have a description of their security policies and procedures available for external review.
• For optimal security, data should be maintained on a single electronic HIV and AIDS surveillance registry.
• States should have policies that provide the flexibility to remove cases that were reported in error or that no longer serve a public health purpose.
• States should review their confidentiality statutes to determine whether additional protections should be put in place before HIV case surveillance begins.
• HIV case surveillance should not interfere with HIV prevention programs, including those that offer anonymous HIV counseling and testing services. The CDC requires states to provide opportunities for anonymous HIV testing and counseling as a condition of federal funding for HIV prevention, unless it is prohibited by state law or regulation.
• All HIV testing services should continue to be voluntary and preceded by informed consent.
• All people diagnosed with HIV infection should be referred to programs that provide HIV care, treatment, and comprehensive prevention case management services.
The guidelines may be modified, taking into consideration public comments received between Dec. 10, 1998, and Jan. 11, 1999. They will then be published in the Morbidity and Mortality Weekly Report.
For copies of the guidelines, call the CDC National Prevention Information Network at (800) 458-5231 or send a written request to P.O. Box 6003, Rockville, MD 20849-6003. The entire guidelines document is available on-line at www.cdc.gov/nchstp/hiv_aids.