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2 Surveillance P ublic-health surveillance is an essential tool in the prevention and con- trol of infectious and chronic diseases and the medical management of people who have the diseases. Surveillance data are used to estimate the magnitude of a health problem, to describe the natural history of a disease, to detect epidemics, to document the distribution and spread of a health event or disease, to evaluate control and prevention measures, and to aid in public-health planning (Thacker, 2000). Public-health surveillance requires standardized, systematic, continuing collection and management of data. In addition, surveillance should encompass timely analysis and dissemination to allow public-health action (CDC, 2001a; Thacker, 2000). Through those steps, federal agencies and state and local health depart- ments are able to inform stakeholders by providing reliable information that can be used to reduce morbidity and mortality through public policy, appropriate resource distribution, and programmatic and educational inter- ventions. The committee has defined (see Box 2-1) the role of surveillance for hepatitis B virus (HBV) and hepatitis C virus (HCV) that is within the scope of its study. This chapter describes how surveillance data are used or could be used to determine the focus and scope of viral hepatitis prevention and control efforts. The committee reviewed the weaknesses of the current surveillance system for hepatitis B and hepatitis C, including the timeliness, accuracy, and completeness of data collection, analysis, and dissemination. It found that there were few published sources of information about viral hepatitis surveillance. To obtain a clearer picture of the activities that were taking place at state and local levels, the committee gathered information from 

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 HEPATITIS AND LIVER CANCER BOX 2-1 Role of Disease Surveillance 1. dentify acute hepatitis B virus (HBV) and hepatitis C virus (HCV) I outbreaks and individual acute cases and measure incidence  • Respond to outbreaks by   o Identifying cases   o Mobilizing appropriate resources to provide preventive services  to eliminate or minimize further transmission  •  evelop accurate estimates of the burden of acute hepatitis B and D hepatitis C in United States 2. Identify chronic cases of hepatitis B and C and measure prevalence  •  evelop accurate estimates of the burden of chronic disease in D United States  • Prevent secondary cases   o Hepatitis B: Education, vaccination, and screening   o Hepatitis C: Education, harm reduction, and screening 3. Link cases to appropriate services, including medical management 4. Evaluate current practices and prevention efforts various sources. Its findings are based on its review of the literature and on information gathered through surveys of and direct contact with profes- sionals working in this field. Much of the information gathered through surveys involved state-level and city-level public-health department staff who were working on programs funded by the Centers for Disease Control and Prevention (CDC). Forty- nine states have a cooperative agreement with CDC that funds a coordina- tor who conducts viral-hepatitis prevention activities, such as health-care provider and consumer education, integration of viral-hepatitis prevention services into health-care and public-health settings, and development of state viral-hepatitis prevention plans. Although the cooperative agreements do not include funds for viral-hepatitis surveillance, the coordinators are good sources of information about surveillance activities being conducted in each jurisdiction. CDC’s Division of Viral Hepatitis (DVH) performed a brief survey of the CDC-funded hepatitis C coordinators in 2006 to gather information about viral-hepatitis surveillance activities. At the request of the committee, CDC again surveyed the coordinators (now called adult viral-hepatitis prevention coordinators, AVHPCs) in April 2009. As part of a national assessment of viral-hepatitis surveillance initiatives, the National

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 SURVEILLANCE Alliance of State and Territorial AIDS Directors interviewed staff involved in enhanced viral-hepatitis surveillance projects funded through CDC’s Emerging Infections Programs early in 2009 (the programs are described in more detail later in this chapter). Committee members also contacted several AVHPCs directly in April and May 2009 to discuss their work. The recommendations for surveillance based on the committee’s find- ings focus on the development of a model designed to improve the quality and accuracy of information by developing systems to collect, analyze, and disseminate data on acute and chronic HBV and HCV infections. The recommendations call for a two-part system: core surveillance activities, building the capacity of state and local health departments to conduct standard disease surveillance on newly diagnosed acute and chronic HBV and HCV infections, and targeted surveillance to obtain data on specific populations that are not represented fully in the collection of core surveil- lance data. Core surveillance means those activities in which all jurisdic- tions must engage to provide accurate, complete, and timely information to monitor incidence, prevalence, and trends in disease diagnoses. Data from other activities, such as targeted surveillance, supplement information from core surveillance, and are necessary to provide accurate incidence estimates, given the challenges of conducting hepatitis B and C surveillance, as de- tailed in this chapter. The recommendations also include guidance regarding the interpretation and dissemination of surveillance data. APPLICATIONS OF SuRvEILLANCE DATA Surveillance data are used in a variety of ways by a broad base of state health-department staff, researchers, clinicians, policy-makers, and private industry. Federal and state health-department surveillance systems provide population-based information that can be used to improve the public’s health. They also offer an opportunity for public-health interven- tion at the individual level by linking infected people to appropriate care and support services (Klevens et al., 2009). Overall, surveillance data are critical in estimating incidence and prevalence of HBV and HCV infections (CDC, 2008c), and they provide a basis for studying and understanding the mechanisms of diverse outcomes in the natural history of these infections (Thacker, 2000). Public health surveillance generally involves name-based reporting of cases of specified diseases to state and local health departments. As such, it requires the gathering of information that some people consider private. Public health officials and state legislatures have weighed the costs and benefits of public health surveillance and have required name-based report- ing of specific diseases with confidentiality safeguards in place to protect private information (Fairchild et al., 2008). Confidential name-based re-

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 HEPATITIS AND LIVER CANCER porting is standard practice for infectious diseases surveillance, including HIV surveillance (CDC, 2008d). Acute HBV infections are reportable in all states and acute HCV infections are reportable in all but one state. All states report the cases to CDC. Chronic HBV infections are reportable in all but six states and chronic HCV infections are reportable in all but seven states (CSTE, 2009). Outbreak Detection and Control Accurate and timely surveillance data are necessary to identify out- breaks of acute HBV and HCV infection in the health-care and community settings. The data can assist in recognizing and addressing breaches in in- fection control, and they can help to mitigate the size of outbreaks. There have been several outbreaks of hepatitis B and hepatitis C in health-care settings in recent years (CDC, 2003b, 2003d, 2005b, 2008a, 2009c; Fabrizi et al., 2008; Thompson et al., 2009). Research on those outbreaks has shown that they typically occurred in dialysis units, medical wards, nursing homes, surgery wards, and outpatient clinics and resulted from breaches in infection control (Lanini et al., 2009). In a 2009 study, researchers found evidence of 33 outbreaks in nonhospital health-care settings in the United States in the last 10 years. Transmission was primarily patient to patient and was caused by lapses in infection control and aseptic techniques that allowed contamination of shared medical devices, such as dialysis machines. The authors stated that successful outbreak control depended on systematic case identification and investigation, but most health departments did not have the time, funds, personnel resources, or legal authority to investigate health-care–associated outbreaks (Thompson et al., 2009). Hepatitis B and hepatitis C surveillance data can be used to identify or quantify new trends in the transmission of HBV and HCV. For example, surveillance data can help epidemiologists to determine whether sexual transmission of HCV reported among some cohorts of HIV-positive men who have sex with men (Matthews et al., 2007; van de Laar et al., 2009) is statistically significant on a population level. Surveillance data have also been used to identify clusters of newly acquired cases of hepatitis C in ado- lescents and young adults and to direct appropriate interventions to persons in the clusters (CDC, 2008f). Those findings can help public-health officials to target their resources at emerging populations being affected by HBV and HCV, such as racial and ethnic populations or geographically linked active injection-drug users (IDUs).

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 SURVEILLANCE Resource Allocation Surveillance data are often used to determine how to use resources most effectively. For example, estimates of disease burden are commonly used to provide guidance to policy-makers on the level of funding required for disease-related programs. If surveillance data are not available or understate the disease burden, legislators and public-health officials will not allocate sufficient resources to mount an appropriate public-health response. Information on disease burden is only one factor that guides policy- makers in allocating public-health resources. Priorities in public funding are also driven by public awareness and advocacy. Therefore, it is im- portant to communicate surveillance trends and disease burden clearly to policy-makers and community advocates. For example, estimates of trends indicate that mortality from HCV may soon exceed that from HIV (Deuffic- Burban et al., 2007). However, despite the large number of individuals and communities affected by hepatitis B and hepatitis C, the resources available for addressing viral hepatitis are only a small fraction of those available for addressing HIV. CDC’s National Center for HIV/AIDS, Viral Hepatitis, Sexually Transmitted Diseases, and Tuberculosis Prevention had a budget of almost $1 billion for 2008, and only 2% of it was allocated to hepatitis B and hepatitis C (Ward, 2008). Sixty-nine percent of the budget was al- located for HIV, 15% for sexually transmitted diseases (STDs), and 14% for tuberculosis. Programmatic Design and Evaluation Public-health organizations use surveillance data to design programs that target appropriate populations. For example, CDC requires states to set priorities among populations for HIV prevention according to data generated by HIV/AIDS surveillance programs and community-services assessments (CDC, 2003a). Surveillance data can also be used to evaluate systems for delivery of prevention and care service. A key potential role of hepatitis surveillance programs is to evaluate the effect of HBV vaccination programs (Wasley et al., 2007). Linking Patients to Care For some diseases, it is desirable to have a surveillance system closely involved in ensuring the linkage of persons who have new diagnoses to health-care services, often called case management (Fleming et al., 2006). For viral-hepatitis surveillance, linking patients who have recent diagnoses to comprehensive viral-hepatitis programs may be indicated to ensure ac- cess to appropriate services, including clinical evaluation, regular followup

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 HEPATITIS AND LIVER CANCER visits, referral to drug-treatment and harm-reduction programs, education about liver health, and prevention of transmission to others. Chapter 5 will discuss the components of viral-hepatitis services. DISEASE-SPECIFIC ISSuES RELATED TO vIRAL-HEPATITIS SuRvEILLANCE Many of the difficulties that surveillance systems face in identifying and tracking cases of hepatitis B and hepatitis C are related to the complexity of the infections and their associated progression (see Figures 2-1 and 2-2). This section highlights some of those challenges. Chapter 5 will provide more detail on issues related to screening and identification. a b c d d FIGuRE 2-1 Natural progression of hepatitis B infection. Abbreviations: HBeAg, hepatitis B e antigen; anti-HBe, antibody to hepatitis B e antigen; HBsAg, hepatitis B surface antigen; HBV, hepatitis B virus; HCC, hepato- cellular carcinoma. aTransmission occurs in 90% of infants of HBsAg+/HBeAg+ mothers and 15% of infants of HBsAg+/anti-HBe+ mothers. b30% of those infected from the age of 1–5 years and under 7% of those infected Figure 2-1, fixed image at the age of 6 years or older. cAbout 50% of patients by 5 years and 70% of patients by 10 years will sero- convert to anti-HBe. d15-25% risk of premature death from cirrhosis and HCC.

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 SURVEILLANCE FIGuRE 2-2 Natural progression of hepatitis C infection. Abbreviations: HCV, hepatitis C virus; RNA, ribonucleic acid; HCC, hepatocellular carcinoma. SOURCE: Adapted from Chen and Morgan, 2006. Reprinted with permission from Ivyspring International Publisher, copyright 2006. Figure 2-2, fixed image Identifying Acute Infections Several factors contribute to the difficulty in identifying acute HBV and HCV infections. Many newly acquired cases are asymptomatic, or they may have symptoms similar to those of other common illnesses and so do not prompt health-care providers to conduct serologic testing for HBV and HCV, or the serologic tests that are conducted are inadequate to distinguish between acute and chronic cases. About 90% of acute HBV infections in children under 5 years of age and 70% of HBV infections in adults are asymptomatic (McMahon et al., 1985); 75–95% of acute HCV infections are asymptomatic (Chen and Morgan, 2006; Guerrant et al., 2001), so few infected patients seek care for the acute illness; and there is a very high probability of underreporting even when care is obtained (Chen and Morgan, 2006; Cox et al., 2005; Hagan et al., 2002). Clinicians

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 HEPATITIS AND LIVER CANCER often are not fully aware of reporting requirements in connection with other reportable diseases and do not initiate reports routinely (Allen and Ferson, 2000). In addition, some persons with chronic HBV infection can experience sudden increases in alanine aminotransferase (ALT) that may be associated with jaundice or liver decompensation. That change may have a variety of causes, including infection with another hepatitis virus; alcohol, drug, or medication use; or sudden hepatitis B disease reactivation that can be associated with the period of seroconversion from a hepatitis B e antigen (HBeAg) state to an antibody to hepatitis B e (anti-HBe) state or reversion from an anti-HBe state back to an HBeAg-positive state (Koff, 2004). Therefore, in investigating acute symptomatic infections, it is important to identify outbreaks so that preventive measures can be undertaken and, in the case of hepatitis B, to identify and screen close contacts who might benefit from the hepatitis B vaccine. Such information is needed if surveil- lance staff is to determine which cases are newly diagnosed, the result of recent exposure, or chronic (Fleming et al., 2006). Classifying acute cases of hepatitis B and hepatitis C requires a complex integration of clinical data, positive and negative laboratory data, and prior or repeat testing (see Boxes 2-2 and 2-3). Many of the test results—for BOX 2-2 CDC Acute Hepatitis B Case Definition Clinical case definition: An acute illness with • discrete onset of symptoms and • jaundice or elevated serum aminotransferase levels Laboratory criteria for diagnosis: •  gM antibody to hepatitis B core antigen (anti-HBc) positive I or • hepatitis B surface antigen (HBsAg) positive • IgM anti-HAV negative (if done) Case classification: Confirmed: a case that meets the clinical case definition and is labora- tory confirmed Abbreviations: CDC, Centers for Disease Control and Prevention; HAV, hepatitis A virus; HBV, hepatitis B virus. SOURCE: CDC, 2009a.

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 SURVEILLANCE BOX 2-3 CDC Acute Hepatitis C Case Definition Clinical case definition: An acute illness with a discrete onset of any sign or symptom consistent with acute viral hepatitis (e.g., anorexia, abdominal discomfort, nausea, vomiting), and either jaundice or serum alanine aminotransferase (ALT) levels >400 IU/L. Laboratory criteria for diagnosis: One or more of the following three criteria: ) Antibodies to hepatitis C virus (anti-HCV) screening test positive 1 with a signal to cut-off ratio predictive of a true positive as determined for the particular assay as defined by CDC, OR ) Hepatitis C Virus Recombinant Immunoblot Assay (HCV RIBA) 2 positive, OR ) Nucleic Acid Test (NAT) for HCV RNA positive 3 and, meets the following two criteria: ) IgM antibody to hepatitis A virus (IgM anti-HAV) negative, AND 1 2) IgM antibody to hepatitis B core antigen (IgM anti-HBc) negative Case classification: Confirmed: A case that meets the clinical case definition, is laboratory confirmed, and is not known to have chronic hepatitis C. Abbreviations: CDC, Centers for Disease Control and Prevention; HAV, hepatitis A virus; HCV, hepatitis C virus; RIBA, recombinant immunoblot assay; RNA, ribonucleic acid. NOTE: URL for the signal-to-cutoff ratios: http://www.cdc.gov/ncidod/diseases/hepatitis/c/ sc_ratios.htm. SOURCE: CDC, 2009a. example, for ALT, aspartate transaminase, immunoglobulin M (IgM) an- tibody to the hepatitis A virus, and IgM antibody to the hepatitis B core antigen (HBcAg)—are difficult for health departments to obtain, particu- larly because negative test results often are not automatically reported to health departments (Fleming et al., 2006). Because auxiliary test results are not systematically reported to health departments, surveillance staff must actively follow up with health-care providers to obtain them and other clinical indicators of acute disease. If the data cannot be obtained, either because the proper tests were not ordered or because there is insufficient staff to conduct followup, cases will be classified ambiguously as nonacute infections.

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0 HEPATITIS AND LIVER CANCER Furthermore, current CDC case definitions may miss a substantial frac- tion of clinically apparent acute cases because they lack clinical markers that could improve case identification and help to distinguish between acute and chronic cases. Using data from electronic medical records, Klompas et al. (2008) found that CDC’s case definition of acute HBV had a positive predictive value of only 47.2% (that is, out of 1,000 people identified as having acute hepatitis B with the CDC case definition, only 472 of them were found to truly have acute hepatitis B). When patients with prior positive tests for HBV infection (or International Classification of Diseases, revision 9, codes for chronic HBV infection) were excluded, the positive predictive value increased to 68.4%. However, the positive predictive value was raised to above 96% by adding the requirement for peak ALT over 1,000 or total bilirubin over 1.5. Most important, when applying the most sensitive algorithm (the algorithm that detected the greatest number of cases of acute hepatitis B), the study found that only four of the eight cases of acute hepatitis B were in the state’s surveillance system and only one of the four was correctly classified as acute; this suggests that 88% of acute hepatitis B cases may be missed if current reporting algorithms are used (Klompas et al., 2008). Similarly, detection of acute hepatitis C can be challenging because no single case definition is either sensitive or specific for it. HCV seroconver- sion may be missed, and there is no IgM-based assay that reliably distin- guishes acute hepatitis C from chronic hepatitis C, unlike the situation with hepatitis A virus or HBV infection. Relatively low HCV ribonucleic acid (RNA) concentrations and more than one log fluctuation in HCV RNA concentration are features of acute HCV infection that may be useful for the development of more dynamic diagnostic algorithms, but the accuracy of these algorithms has not been validated (Cox et al., 2005; McGovern et al., 2009; Villano et al., 1999). In summary, the identification of acute hepatitis infection is inherently flawed because the vast majority of cases are asymptomatic and patients do not seek medical care or testing. Such persons would be identified only in prospective studies that include routine serial testing of liver enzyme concentrations, such as those previously conducted to identify the incidence of transfusion-associated hepatitis. Underreporting of diagnosed cases and misclassification of reported cases seriously limit the accuracy of data on cases of acute viral hepatitis collected by state and territorial surveillance programs and transmitted to CDC. Thus, the estimates of the incidence of acute hepatitis in the United States are based solely on symptomatic cases. The majority of those cases may be missing from the surveillance system because of poor access to health care, underreporting, and misclassifica- tion. Taken together, published surveillance summaries of reported cases of acute viral hepatitis substantially underestimate the number of cases; these

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 SURVEILLANCE summaries may give misleading impressions of the incidence of disease to policy-makers and program planners. Identifying Chronic Infections Given that both hepatitis B and hepatitis C infections are largely asymptomatic, most people do not receive a diagnosis until the infection is chronic. For hepatitis B, the chance of developing a chronic infection varies with age at the time of infection. In persons over 6 years old, the vast majority of acute HBV infections are self-limited (Hyams, 1995). However, hepatitis B infections become chronic in over 90% of infants who are infected at birth or in the first year of life and in 30% of children who are infected at the age of 1–5 years (Pungpapong et al., 2007). Although hepatitis B surface antigen (HBsAg) is detectable within 4–10 weeks after infection, it is indicative of chronic HBV infection only if it persists for more than 6 months (Koff, 2004). An accurate diagnosis of chronic hepatitis B may therefore require the report- ing of multiple serologic markers at more than one time (Koff, 2004). For disease-surveillance purposes, it can be challenging for health de- partments to obtain the complete laboratory results that are necessary to classify a chronic hepatitis B case according to CDC’s case definitions (see Box 2-4). In general, a full hepatitis B panel (including any negative results for IgM anti-HBc) is required or two HBsAg results at least 6 months apart. Although states govern laboratory-reporting requirements in their jurisdictions, negative test results are generally not reportable and must be actively obtained. CDC’s Guidelines for Viral Hepatitis Surveillance and Case Management recommend that only positive HBsAg-test results be reported, but this test alone is inadequate to distinguish acute from chronic infection. Automated systems attached to electronic medical records may help to address surveillance for chronic HBV cases in the future, but in the meantime many diagnoses of chronic HBV infection probably will not be correctly captured and classified as confirmed cases (CDC, 2005a). Surveillance for chronic HCV infection also presents challenges (see Box 2-5). In adults, about 15–25% of acute hepatitis C infections resolve spontaneously (Villano et al., 1999). That may increase to about 45% in children and young adults (Vogt et al., 1999). The presence of HCV RNA is generally detected within 1 week of infection (Mosley et al., 2005), but antibodies to HCV (anti-HCV) can be detected in only 50–70% of infected persons at the onset of symptoms; this increases to more than 90% after 3 months (NIH, 2002). A chronic infection is characterized by the persistent presence of HCV RNA for at least 6 months (NIH, 2002). Typically, when a patient presents for HCV testing, the first test that is conducted is for the presence of anti-HCV. This test is generally an en-

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 HEPATITIS AND LIVER CANCER Case Definitions CDC should revise and standardize definitions and methods. Revised case definitions should reflect active and resolved hepatitis C infection (for example, a case should not be confirmed if only antibody test results are available). Recommended testing for hepatitis C should include, where pos- sible, HCV RNA tests to determine whether a person is actively infected. The case definition for acute HBV and HCV infection should be revised to remove the need for symptoms for classification as a confirmed case. Classification as a suspected case of acute HCV infection should be used to encourage active followup of likely recent infections (for example, in adolescents and young adults) (CDC, 2008f). Case-Reporting Form The case-reporting form should be standardized, and core components of it should be required of all jurisdictions to permit better capture of information on cases of acute and chronic HCV and HBV infection. The required elements should be such that they could reasonably be found in a patient’s medical record. For example, the current CDC form requests the number of sexual partners in a given period. That information is not typi- cally found in a medical record or known by a medical provider. Additional, more comprehensive epidemiologic studies could be funded to provide for patient interviews and a detailed assessment of risk factors (see Recom- mendation 2-3). Furthermore, the case-reporting form should collect more detailed demographic data on racial and ethnic populations to identify and address disparities among populations. For example, the case-reporting form should include categories for different ethnicities and should disag- gregate Asians and Pacific Islanders (for example, Chinese, Vietnamese, Japanese, and Marshallese). Automated Data-Collection Systems Automated or passive methods of accessing and processing test results should be supported and improved. Enhancing and expanding automated methods of collecting data (for example, Web-based disease-reporting sys- tems, electronic laboratory reporting, and electronic medical records) reduce staff time, increase timeliness and completeness, and minimize data-entry errors (Klevens et al., 2009; Klompas et al., 2008; Lazarus et al., 2001; Panackal et al., 2002; Vogt et al., 2006; Wurtz and Cameron, 2005). Given the volume of viral-hepatitis data, automated systems clearly are indicated (Hopkins, 2005). However, it has been noted that although electronic laboratory reporting can greatly increase the timeliness and accuracy of

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 SURVEILLANCE reporting, it does not remove the need for health departments to conduct additional followup to obtain information not contained in laboratory reports, such as symptoms, race and ethnicity, and risk history (Hopkins, 2005; Klevens et al., 2009). A pilot study of a surveillance system based on electronic medical re- cords in Massachusetts found a 39% increase in reported cases of chlamydia and a 53% increase in reported cases of gonorrhea over a 12-month period compared with cases reported through the existing passive surveillance system. The system was also able to identify 81 instances of pregnancy not identified by passive surveillance in patients with chlamydia or gonorrhea (CDC, 2008b). The system was shown to identify cases of acute HBV in- fection reliably, including cases that had not yet been reported to state au- thorities (Klompas et al., 2008). Other studies have found a similar benefit of improving surveillance for infectious diseases via automatic notification with electronic medical records (Allen and Ferson, 2000; Hopkins, 2005). CDC should promote the use of surveillance systems based on electronic medical records and open-source platforms that will enable the extraction and transmission of data to state and local health departments. Standardized Laboratory Reporting It is essential that laboratory data be standardized and that health departments have automated access to them. Automated electronic laboratory reporting improves the completeness and timeliness of disease surveillance (Effler et al., 1999, 2002; Overhage et al., 2008; Panackal et al., 2002; Ward et al., 2005). Currently, many laboratory-data collection systems do not integrate or link the multiple laboratory tests needed to satisfy a case definition (CDC, 2008b). That could be more easily addressed with electronic laboratory reporting. CDC should work with states and laboratories to develop and standardize elec- tronic systems. In addition, it may be useful for CDC to document and monitor which laboratory tests are reportable in each state, as is done for the HIV surveillance system. Identifying Pregnant Women There is a strong need to identify pregnant women who have chronic HBV to ensure that appropriate followup of the newborn is conducted with regard to receipt of HBIG and hepatitis B vaccine. Currently, most health departments lack an automated means of determining whether the subject of a reported positive HBsAg test was a pregnant woman. Local health departments have to investigate all positive hepatitis B tests in women of childbearing age, and this creates a substantial workload. CDC should work with national laboratory vendors to identify ways of reporting whether positive HBV tests are linked with prenatal pan- els. Web-based surveillance systems may be useful for improving capture of data on pregnant women who have HBV infection (LaPorte et al., 2008).

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0 HEPATITIS AND LIVER CANCER PHIN-Compliant Systems CDC needs to contribute to more timely de- velopment of PHIN-compliant systems in all jurisdictions. A review of the literature evaluating the timeliness of reporting of infectious diseases found that reporting lag and the variability among states limit the usefulness of data. The inconsistency in reporting limits CDC’s ability to identify and respond to multistate outbreaks in a timely manner. The review called for a more standardized approach in evaluating and describing surveillance- system timeliness (Jajosky and Groseclose, 2004). Although it did not look specifically at hepatitis B or hepatitis C, its conclusions are relevant to the present report. Electronic Medical Records The reporting of relevant infectious-disease test results should be a component of electronic medical-record systems. CDC should support state and local jurisdictions in working with clinical and community health-center partners to develop algorithms for auto- matic viral-hepatitis disease reporting based on electronic medical records. It has already been shown to be effective in enhancing acute-HBV report- ing without adding to the burden on medical providers (Klompas et al., 2008). Case Investigation and Followup Standards for case investigation and followup should be developed and implemented to ensure that newly diagnosed patients receive ad- equate information and referrals. An effective surveillance system should identify most of the diagnosed cases of both acute and chronic HBV and HCV infections. Identification of infected people by health departments should be the first step in getting them into appropriate care. Because of resource and system inadequacies, it is not. Most health departments indicated that they were unable to do more than follow up on potentially pregnant HBV-positive women (personal communication, Adult Viral Hepatitis Prevention Coordinators, May 2009). If state health depart- ments had appropriate funding to follow up recently diagnosed cases of HBV and HCV infection directly, more people would be able to receive appropriate education and referral into the array of medical and social- service care that may be indicated. Analyzing, Reporting, and Disseminating Findings Once the capacity for state health departments to conduct HBV and HCV surveillance is improved, CDC should report accurate results that are based on the improved data. As discussed earlier in this chapter, there are important concerns about underreporting, particularly of the incidence of

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 SURVEILLANCE acute HCV infection. Until the quality of the data collected has improved, reports should clearly indicate the limitations of the data. For example, •  rends in acute HBV and HCV infections should be interpreted T with caution because of systematically missing cases that represent the burden of disease in particular risk groups. •  iscussions of data on acute HBV and HCV infections should D reflect the issue of the large number of chronic infections to ensure appropriate understanding of the scope of the problem. •  eported incidences should be presented as ranges rather than R single numbers to reflect the uncertainty of the estimates. Targeted Surveillance Once core hepatitis B and hepatitis C surveillance activities are well established, supplemental or pilot projects should be tested. CDC should develop and support innovative supplemental surveillance programs. Recommendation 2-3. The Centers for Disease Control and Preven- tion should support and conduct targeted active surveillance, including serologic testing, to monitor incidence and prevalence of hepatitis B virus and hepatitis C virus infections in populations not fully captured by core surveillance. •  ctive surveillance should be conducted in specific (sentinel) geo- A graphic regions and populations. •  ppropriate serology, molecular biology, and followup will allow for A distinction between acute and chronic hepatitis B and hepatitis C. Enhanced Surveillance Supplemental surveillance projects should be funded or conducted by CDC and should include serosurveillance among targeted populations. Serosurveillance projects will provide data for improved estimation of the scope of the problem in underrepresented populations such as certain racial and ethnic groups, and at-risk populations, including institutional- ized, homeless, immigrant, and refugee populations. Enhanced surveillance projects should be structured to obtain information in both rural and urban regions of the United States. Serosurveillance programs should be flexible and allow researchers to focus on emerging behavioral risks, for example, in adolescents and young adults and in HIV-positive men who have sex with men (Klevens et al., 2009). Conducting serosurveillance or screening among at-risk populations in correctional facilities may provide opportunities to

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 HEPATITIS AND LIVER CANCER collect more detailed data and to refer people directly into appropriate medical care, including treatment for acute HCV infection (McGovern et al., 2006). Other enhanced surveillance projects should include •  etermining the level of care that patients receive after diagno- D sis, including medical and social-service referrals and treatment (Fleming et al., 2006). •  ollowing subsets of cases to improve understanding of natural F history (Global Burden of Hepatitis C Working Group, 2004). •  atching data on chronic hepatitis B and hepatitis C with cancer M registries (Global Burden of Hepatitis C Working Group, 2004). •  atching data on chronic HBV and HCV infections with HIV/AIDS M data to determine the burden of coinfection in communities. •  easuring the vaccination status of acute HBV infection cases and M identifying missed opportunities for vaccination. •  nsuring that viral hepatitis is addressed and integrated with ap- E propriate projects for the National HIV Behavioral Surveillance System. •  easuring HBV and HCV seroconversion rates in selected M populations. Partner Services Partner services have been found to be effective in identifying un- diagnosed cases of HIV (Hogben et al., 2007). Similar programs could potentially be useful identifying cases of hepatitis B and hepatitis C (CDC, 2008e; Hogben and Niccolai, 2009; Marcus et al., 2009). State and local health departments should be funded to pilot and evaluate partner-services programs for suspected acute and chronic cases of HBV infection and acute cases of HCV infection, especially in young people. Integration with exist- ing partner service programs should be explored. Evaluation should focus on the efficacy of referral into care services and on screening of exposed partners—sexual partners for hepatitis B and drug-sharing partners for hepatitis B and hepatitis C (CDC, 2007). REFERENCES Allen, C. J., and M. J. Ferson. 2000. Notification of infectious diseases by general practitioners: A quantitative and qualitative study. Medical Journal of Australia 172(7):325-328. Alter, M. J., W. L. Kuhnert, and L. Finelli. 2003. Guidelines for laboratory testing and result reporting of antibody to hepatitis C virus. Centers for Disease Control and Prevention. Morbidity and Morality Weekly: Recommendations and Reports 52(RR-3):1-13, 15; quiz CE11-CE14.

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