Background Information for the Surveillance Coordinator

• How should HIV/AIDS surveillance data be used?
• What types of patient services might patients be referred to through the use of individual case reports?
• What are partner counseling and referral services (PCRS) and how are they carried out?
• What is HIV prevention case management?
• How do some health departments use individual HIV case reports to initiate referrals for prevention and medical services?
• What are CDC's recommendations regarding the use of HIV surveillance data for referrals to patient services, such as prevention case management or PCRS?
• What issues should health departments and communities consider before making the decision to use confidential information obtained through HIV/AIDS surveillance for PCRS or case management services?
• What steps should local areas take when developing appropriate procedures for using surveillance data to initiate referrals to patient services?
• Are health department staff required to contact those who are reported through HIV surveillance?

Handouts

• Using HIV Surveillance Data: Focus on New Jersey
• Frequently Asked Questions about HIV Surveillance and its Relationship to Prevention and Treatment Services

Introduction to the Issue

Although the HIV surveillance system was not designed for case management purposes, some states and territories have chosen to use individual case reports to offer HIV-infected individuals referrals to voluntary prevention and care services. States that are using the HIV surveillance database for this purpose should follow established guidelines and standards for maintaining security and confidentiality of HIV surveillance information. States implementing HIV case surveillance and considering using case reports as a basis for offering voluntary referrals to prevention and treatment programs should do so only when principles and practices are developed locally in collaboration with community partners. The collaborative process should include developing explicit protocols with appropriate clearances that establish practices for contacting providers and patients and ensure that security and confidentiality protections are in place if information from HIV/AIDS surveillance is used to initiate any contact with patients.

This Toolkit can help guide discussions between surveillance staff and prevention programs and community advisory groups on the ways in which information from the HIV/AIDS surveillance database may be used as a mechanism for referring HIV-infected individuals to prevention, medical, and social services when areas decide to do so locally. The various HIV-related services that patients and their providers may choose are described. In addition, the Toolkit outlines some issues that should be considered before making the decision to use HIV surveillance in this way, suggests alternative strategies, and outlines a process for deliberations.

This Toolkit:

• reviews in question and answer format some issues surveillance staff and stakeholders must consider when discussing how HIV/AIDS surveillance data may be used to provide referrals for HIV-related prevention and medical services, and
• provides materials that may be useful in discussions with stakeholders.

The Resource Manual's Appendix, bound separately, contains the following background resources that provide more comprehensive information on the issues and on current CDC guidelines and practices:

• CDC. Public health uses of HIV-infection reports-South Carolina, 1986-1991. Morbidity and Mortality Weekly Report 1992;41(15):245-249. (Located in the Toolkit 1 section of the Appendix.)
• CDC. U.S. Public Health Service Recommendations for human immunodeficiency virus counseling and voluntary testing for pregnant women. July 7, 1995 . Morbidity and Mortality Weekly Report 44 (No. RR-7).
• CSTE. National HIV Surveillance: Addition to the National Public Health Surveillance System. 1997 CSTE Annual Meeting Position Statement #ID-4. (Located in the Toolkit 1 section of the Appendix.)
• Fenton KA, Peterman TA. HIV partner notification: taking a new look. AIDS 1997;11(13):1535-1546.
• West GR, Stark KA. Partner notification of HIV prevention: a critical reexamination. AIDS Education and Prevention 1997;9(Supplement B):68-78.

In addition, surveillance coordinators may want to consult these two resources, which CDC has distributed separately:

• CDC. Draft HIV Partner Counseling and Referral Services Operational Guidelines. October, 1998.
• CDC. HIV Prevention Case Management-Guidance. September 1997.

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Background Information for the Surveillance Coordinator

As surveillance officers and their staffs work with prevention programs and community representatives, they may receive questions about how individual surveillance data may be used by health departments for purposes of referral to services or other program activities. This section provides background information, organized by questions that may be raised, to help surveillance staff explain CDC recommendations, discuss the implications and answer questions about the issues.

« This symbol points out further supporting materials contained in Toolkit 5 or directs the reader to related materials in other Toolkits.

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How should HIV/AIDS surveillance data be used?

HIV and AIDS data should be used to monitor changing epidemiologic trends in incidence and outcomes, assist in formulating public health policy, document the need for services, and direct available resources for targeted prevention interventions for persons with HIV. This is done through the use of aggregate data. Aggregate data include summary statistics compiled from personal information, but grouped to preclude identification of individual cases. For example, the number and characteristics of persons living with HIV by geographic area may be used to determine the distribution of local care services or assess the need for drug assistance programs. HIV data may also be used to set priorities among areas and groups at risk that might benefit from targeted HIV testing and counseling programs.

Together with local community advisory groups, health departments may determine that another appropriate use of surveillance data is to use individual-level data from HIV surveillance registries to prompt follow up by the health department with patients or providers to offer voluntary referrals for various patient services. Individual-level data include case specific data where individuals are identified. There is no CDC requirement that surveillance programs share individual case reports with prevention or care programs. To be consistent with the federal assurance of confidentiality under which CDC collects HIV/AIDS surveillance data and the purpose for which CDC provides support to states to conduct HIV/AIDS surveillance, individual-level surveillance data should not be used to directly or indirectly identify an individual for non-public health purposes, such as the release of individual-level data to the public, to parties involved in civil, criminal, or administrative litigation, or to non-health agencies of the federal, state, or local government.

« Using HIV Surveillance Data: Focus on New Jersey is a handout that summarizes that state's experiences using aggregate HIV surveillance data for planning and policy purposes.

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What types of patient services might patients be referred to through the use of individual case reports?

This might include a wide range of care services, such as medical treatment, social or support services, or laboratory testing, including CD4+T-lymphocyte testing. In addition, prevention services, such as assistance with notifying sex and needle-sharing partners, prevention case management, and counseling and testing services, may also be offered.

What are partner counseling and referral services (PCRS) and how are they carried out?

The goals of PCRS are to provide services to sex and needle-sharing partners of HIV-infected individuals and to help partners gain access to individualized counseling, testing, medical evaluation, treatment, and other prevention services. It is a means of alerting individuals who may not know they have been exposed to HIV through sexual contact or needle-sharing practices to the possible need for testing and medical services. It also is a means of reaching individuals early in the disease process so they are able to more quickly take advantage of new therapies for treatment of HIV infection and opportunistic infections. Prevention education and risk reduction services are also important for those exposed to HIV to help prevent further spread in the community.

Partners may be notified either by the individual who has been diagnosed with HIV, by his or her health care provider, or by a health professional from the health department. HIV infected persons do not have to reveal their partners to their physicians or to the health department to receive needed medical services. In many cases, the individual is coached on ways to notify his or her own partners and provided with information that partners will need to seek testing and other services.

If partners are contacted by health department staff, they are referred to testing and other support services, and their confidentiality is under the same laws, rules, and mechanisms that apply to HIV-infected individuals. Partners' decisions to seek services are entirely voluntary. For more detailed information on PCRS, surveillance coordinators can contact the CDC Community Assistance, Planning, and National Partnerships Branch (CAPNP) HIV prevention project officer, who can provide copies of the Draft HIV Partner Counseling and Referral Service Operational Guidelines-October 7 1998.

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What is HIV prevention case management?

HIV Prevention Case Management (PCM) is a client-centered HIV prevention activity with the goal of promoting the adoption and maintenance of HIV risk-reduction behaviors by clients with multiple complex problems and risk-reduction needs. It is a hybrid of HIV risk reduction counseling and traditional case management that includes intensive, ongoing, individualized prevention counseling, support, and service brokerage. CDC provides funding and technical assistance for individual-level health education and risk-reduction activities, including PCM. Guidance for planning, implementing, and evaluating PCM is provided in HIV Prevention Case Management-Guidance. September 1997., which may be obtained through the CDC National AIDS Clearinghouse at 1-800-458-5231.

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How do some health departments use individual HIV case reports to initiate referrals for prevention and medical services?

Some states have instituted local policies that allow individual case reports to be used to trigger follow-up activities by the health department in which individuals are referred to prevention and treatment services. Areas with these linkages primarily do so to facilitate offering services to persons tested in non-public health clinic settings, because follow up with health department clients (i.e., persons tested in public STD clinics or counseling and testing sites) to provide referrals to appropriate prevention and care services is routine. Contacting non-health department reporting sources (e.g., hospitals, private physicians, clinics, or blood banks) may be done to provide training and education regarding conduct of PCRS, provide information about available services, or seek permission to contact patients.

Because the majority of persons reported with HIV infection are tested in medical settings (not public health clinics), areas considering offering referrals for services (e.g., PCRS) based on surveillance case reports should carefully consider if there is a need to follow up with patients tested and reported by private providers (e.g., private physicians, HMOs). Offering assistance with post-test counseling or referrals to test providers that do not routinely provide medical or prevention services (e.g., blood banks or laboratories) may also be considered. Policies regarding contact by health department staff of persons tested in non-health department settings should be developed locally by health departments in collaboration with communities and providers. For health department staff to directly contact patients tested by a non-health department provider without first contacting that provider may be seen as intrusive and be an inefficient use of public health resources. Follow up by health department staff of persons reported with HIV should be conducted with the participation of the physician or provider who ordered the HIV antibody test. In some states, the health department must always obtain permission from the HIV-infected individual's physician before contacting that person. Although surveillance staff may inquire about the patient's need for services and referrals while following up on case reports or when obtaining complete data (e.g., risk information) from a provider, surveillance staff should not be responsible for contacting patients to provide these referrals. Rather, health department staff who are responsible for PCRS or patient case management should initiate the contact following locally established procedures. The figure on page 5-9 diagrams an example of how this contact should take place.

Some examples of locally developed procedures for using individual case reports to initiate patient services include:

• In Minnesota, all persons testing HIV positive are contacted by health department staff and provided, on a voluntary basis, with referrals for case management, assistance with obtaining Medicaid and drug assistance, and partner notification services. After receiving HIV positive reports from laboratories and other sources, surveillance provides information to designated prevention staff who then coordinate contact with patients. Information from surveillance is provided on a case-by-case basis to prevention staff at weekly sessions using a confidential process. HIV prevention staff try to work with providers to ensure that the doctor or doctor's staff has a chance to discuss health department support services with the patient first. This gives the patient some advance notice to expect a contact from the health department and an opportunity to ask questions of a familiar provider. This discussion may relieve some of the anxiety or fear that individuals may experience when health department contact is unexpected or not understood. HIV surveillance and prevention staff believe this increases patient and provider cooperation with health department programs.
• In Missouri, the health department seeks permission from providers before contacting patients tested in the private sector. Surveillance staff obtain physician approval to contact a patient tested in and reported from the private sector while they are obtaining information that was not included with the original case report. If the provider thinks follow up with the patient is appropriate, surveillance staff share the individual case report with designated heath department staff, who distribute cases for follow up to local field investigators. Disease investigators offer PCRS and inform the patient about the availability of "service coordination" in their state.

« Frequently Asked Questions about HIV Surveillance and its Relationship to Prevention and Treatment Servicesis a handout that describes surveillance's links to services and partner notification.

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What are CDC's recommendations regarding the use of HIV surveillance data for referrals to patient services, such as prevention case management or PCRS?

CDC maintains that individual HIV case data need not be used directly to initiate prevention or patient services. Rather, aggregate surveillance data can be used to direct non-surveillance health department staff (e.g., case managers, disease investigators) to providers or reporting sources to advise them of available prevention and services for their patients. If providers ask for assistance, areas should follow locally-established protocols and procedures to respond to provider and patient needs.

Ultimately, CDC considers the decision to use HIV surveillance to initiate case management services or referrals to other services to be a local decision. If established, these linkages should not compromise the quality or security of the surveillance system nor compromise the quality, confidentiality, and voluntary nature of prevention case management or other services. Methods undertaken should not jeopardize support for representative, complete, and timely case reporting or be inconsistent with CDC required standards for security and confidentiality of HIV/AIDS surveillance data. If areas, with the concurrence of community planning groups, elect to share individual case data from surveillance with other programs, the recipients of the surveillance information should be subject to the same penalties for unauthorized disclosure as are surveillance personnel. In addition, prevention programs that use HIV surveillance case data should evaluate the effectiveness of this approach and the program's policies and practices that protect against breaches of confidentiality.

« See Security Standards for Protection of HIV/AIDS Surveillance Information and Data. Appendix C: Guidelines for HIV/AIDS Surveillance-1998 for information regarding security and confidentiality standards for HIV data.

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What issues should health departments and communities consider before making the decision to use confidential information obtained through HIV/AIDS surveillance for PCRS or case management services?

There are two key issues that health departments should consider before deciding to use data for PCRS or case management:

Whether linking surveillance for referrals to patient services may affect the acceptability of the system. Linking HIV surveillance to services may adversely affect the acceptability of HIV surveillance by the community and providers because it may be perceived as an unauthorized release of information from the surveillance system. One way of increasing acceptability may be to involve physicians in the process. For example, if case reports result in referrals from surveillance to other health department staff for the purpose of offering prevention services, health care providers should be contacted before notifying the patient and offered an opportunity to say whether follow up with the individual is appropriate or necessary. Physicians should be encouraged to counsel their patients about the probability of a health department visit (as local policy dictates) so the patient can be prepared for or expect the initial contact and understand its purpose. In one state, the patient is given the option of calling appropriate health department staff himself or herself and is therefore put in control of the process. This option enables the patient to preserve his or her confidentiality.

Whether there are alternative strategies for offering PCRS or case management that might be more feasible, timely, and efficient and that do not require the use of individual HIV/AIDS case reports. HIV surveillance and PCRS activities do not need to be linked in order to be effective public health tools. For example, focusing PCRS activities or referrals to other services in places where clients are present at public clinics and counseling and testing sites may be more efficient programmatically, less intrusive to individuals, ensure more timely provision of such services, and does not require a direct link to surveillance case reports. Public health providers can then ensure discussion of the PCRS process during pretest counseling in a controlled and confidential environment. Focused PCRS activities may facilitate client-centered counseling methods and allow for better referrals to treatment and other care services. Another strategy that does not require linkage to surveillance might include providing targeted testing services in high prevalence areas. Areas may also choose to target education to large providers of HIV care and assist in developing mechanisms of referral for health department services when needed. In some states, health department staff train physicians to provide partner services and referrals and only contact the provider's patients at the provider's request.

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What steps should local areas take when developing appropriate procedures for using surveillance data to initiate referrals to patient services?

If a health department and community together decide to use surveillance data to initiate PCRS or case management, they should discuss the flow of information in detail, develop a protocol, and conduct a pilot of the proposed system. (The figure shows an example of information flow in public and private settings.) The protocol should include objectives and cover practical considerations such as what information will be released, who will have access to it, what security measures will be in place (particularly if information is shared outside of surveillance), and how the system will be evaluated. Data should not be shared with programs that do not have well defined public health objectives or with programs that cannot guarantee confidentiality. Prevention programs that receive surveillance information must be subject to the same penalties for unauthorized disclosure as are surveillance programs, and they must maintain the shared data in a secure and confidential manner. At a minimum, areas should develop a written protocol, and pilot test the system in one or two areas before widespread implementation to ensure procedures are appropriate, and that the system achieves stated goals and objectives and is acceptable to providers and the community.

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Are health department staff required to contact those who are reported through HIV surveillance?

There is no federal requirement that health department staff contact HIV-infected individuals or their sex or needle-sharing partners. However, as a condition of HIV prevention funding, CDC requires all state HIV prevention programs to "establish standards, implement, and maintain procedures for confidential, voluntary, client-centered counseling and referral of sex and needle-sharing partners of HIV infected persons, consistent with the current CDC Partner Counseling and Referral Services Guidance" and "maintain their good faith effort to notify spouses of infected persons as required by law and as certified to CDC" regardless of the state's HIV reporting laws. CDC and CSTE have stated that HIV surveillance and PCRS activities do not need to be linked in order to be effective public health tools.

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Using HIV Surveillance Data: Focus on New Jersey

New Jersey was the first state with high HIV prevalence to include HIV reporting in its surveillance system. New Jersey added HIV surveillance to its existing AIDS surveillance system in October 1991 and began reporting case data in January 1992. Since that time, the state has used aggregate HIV surveillance data to improve its ability to monitor the epidemic. In turn, this enhanced monitoring capability has allowed public health workers to better target prevention and treatment services for HIV-infected people, and also has served as a basis for policy decisions and program evaluation.

Improved Prevention Planning and Priority Setting

Surveillance data are used to inform the community prevention planning process. Community planning groups, made up of local representatives from public health and community organizations serving persons with HIV and members of the infected community, currently dictate the targeted populations and geographic distribution of funded activities for street and community outreach, health education risk reduction sessions, and prevention case management. Surveillance data help planners set priorities and reassess need for services in their communities.

Bridgeton, New Jersey is a classic example of the use of HIV data in prevention planning. According to AIDS reports from Bridgeton through 1997, women accounted for 24% of the patients, men accounted for 76% of the patients and the 20- to 29-year-old age range accounted for only 9% of the patients.

However, as shown here, HIV data showed a completely different picture. According to HIV reports from Bridgeton, women accounted for 43% of the cases, men accounted for 57% of the cases, and the 20- to 29-year-old age range accounted for 39% of the patients, making it the age range with the largest number of cases. The HIV data provided a more accurate picture of where the epidemic existed and where it was headed. In contrast, AIDS information showed only where the epidemic had been.

Brighton, NJ: Data through 12/31/97

Based on the information provided by HIV surveillance data, Bridgeton initiated a targeted prevention program for younger women and youth. It includes multiple ongoing small group sessions and prevention case management for women and youth.

Resource Management and Funding Allocation

Drug Assistance. Many states have been concerned that adding new antiretroviral therapies to their AIDS drug distribution program would drain resources and necessitate limiting enrollment into the program. When the question of adding these new medications to New Jerseys drug assistance program arose, the state was able to base its decision, in part, on an economic model formulated from the estimated number of people in New Jersey living with HIV or AIDS. HIV surveillance provided critical data on the potential number of infected persons and the percentage that would be eligible for the program. While many states have had to modify their eligibility criteria, New Jersey was able to add all of the new antiretroviral agents and remain solvent without modifying the eligibility criteria.

Better Directing of Treatment Resources. The number of people living with HIV and AIDS is used for planning purposes because it provides a more accurate representation of the number of people who will require care in a specific geographic area. New Jersey and other states are working toward a more equitable overall funding of Ryan White money per case.

Evaluation of Perinatal Prevention Efforts

Evaluating Public Health Recommendations. HIV data have played an important role in evaluating the implementation of the public health service recommendations for the prevention of mother-to-infant (perinatal) HIV transmission in New Jersey . Because New Jersey has name-based HIV reporting, public health officials have been able to follow children who were exposed to HIV perinatally to determine their final HIV status. Aggregate HIV surveillance data have been used to monitor Zidovudine (ZDV) use in pregnant women and subsequent trends in perinatal transmission. The percentage of children infected as a result of perinatal HIV exposure in New Jersey decreased from 22% in 1993 to 15% in 1995. HIV data also indicated that the HIV status of 96% of HIV positive pregnant women was known at or before birth.

Argue Against Mandatory Testing. HIV data have been used to inform the Medical Society of New Jersey and the New Jersey legislature, the Governors AIDS Advisory Council, and the National Academy of Sciences/Institute of Medicine Committee on Perinatal HIV Transmission, that the New Jersey law requiring mandatory HIV counseling and voluntary testing for all pregnant women appears to be working well in New Jersey, and there is no need for mandatory testing of newborns.

Tracking Emerging Issues of Public Health Importance

Monitoring Recent Infection. HIV surveillance data are used to characterize persons likely to have recently acquired their HIV infection based on documented recent seroconversion, persons with high CD4 counts, and young persons recently diagnosed with HIV. Aggregate HIV surveillance data in New Jersey are used to help identify where new infections may be occurring and describe risk exposure associated with recent infection. HIV data on persons with recent HIV infection in New Jersey is being used to guide more focused research on circumstances surrounding testing, previous sexual and drug-using behaviors that may have been associated with HIV transmission, as well as current behaviors among persons with recent HIV infection.

Keeping a Watch for Unusual HIV Strains. HIV, a pathogen that mutates extensively, presents significant challenges to effective disease control. In the United States, the most common HIV strain is identified as HIV-1, Group M, Subtype B. Data from New Jerseys HIV surveillance system formed the basis of special studies to detect variant strains of HIV in the state. The first U.S. case of HIV-2, a type primarily found in West Africa, was identified in New Jersey through the surveillance system. An additional study led to the identification of variant strains of HIV in the state. Information from HIV surveillance provided public health officials with the basic information to guide development of a separate system to detect variant strains of HIV, and this is now in place in New Jersey . Understanding variations of HIV will help ensure that diagnostic tests will be able to detect the virus both for proper testing and to protect the safety of the blood supply.

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Frequently Asked Questions on HIV Surveillance and its Relationship to Prevention and Treatment Services

How should HIV/AIDS surveillance data be used to direct services?

In addition to monitoring changing epidemiologic trends, HIV and AIDS data should be used to assist in formulating public health policy, documenting the need for services, and directing available resources for targeted prevention interventions for persons with HIV. This is done through the use of summary HIV data. For example, the number and characteristics of persons living with HIV by geographic area may be used to determine the distribution of local care services or assess the need for drug assistance programs. HIV data may also be used by communities and health officials to set priorities among areas and groups at risk that might benefit from targeted HIV testing and counseling programs, redistribution of drug assistance programs, or community outreach and education programs.

When people with HIV are reported to the health department, do they automatically get prevention and treatment services?

No. There is no automatic or recommended link between HIV surveillance and prevention services. All states have programs in place to offer voluntary partner counseling and referral services (PCRS) regardless of whether the state requires HIV reporting or not. In addition, some states also offer referrals for treatment services to patients seen within the public health clinic system.

Some states use HIV case data to trigger referrals of individuals to services. However, the extent to which individual HIV case data are used to facilitate access to prevention and care services varies from state to state, depending on factors such as resources, the available array of services, and community concerns about release of confidential information for purposes other than surveillance.

What is the linkage between HIV surveillance programs and HIV prevention case management and care programs?

CDC considers that the decision to link surveillance with case management services should be made at the local level and should be developed in the broader context of HIV prevention community planning or other advisory processes. If established, these linkages should not compromise the quality or security of the surveillance system nor compromise the quality, confidentiality, and voluntary nature of prevention case management services. Although CDC is not directly responsible for the delivery of medical care for persons with HIV, CDC does provide funds for state and local programs to facilitate the referral from HIV counseling and testing programs and health education risk reduction programs to HIV care facilities.

How do some health departments use HIV case reports to assist in offering referrals to services?

Prevention services and referrals are routinely offered to persons testing HIV positive in health department clinics and counseling and testing sites. However, the extent to which health departments use HIV data to assist in offering services to persons tested in other settings varies. When persons are reported with HIV from non-health department providers, such as physicians and HMOs, health departments offer services through or with the participation of the physician or provider who ordered the HIV antibody test. For example, health department staff may contact the provider to offer information on services available to their patient or they may discuss meeting with their patient if appropriate. In these areas, health department staff always obtain permission from the HIV-infected individuals physician before contacting the person directly.

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