Fostering Governance and Information Partnerships for Chronic Disease Surveillance: The Multi-State EHR-Based Network for Disease Surveillance.

CONTEXT: Electronic health records (EHRs) are an emerging chronic disease surveillance data source and facilitating this data sharing is complex. PROGRAM: Using the experience of the Multi-State EHR-Based Network for Disease Surveillance (MENDS), this article describes implementation of a governance framework that aligns technical, statutory, and organizational requirements to facilitate EHR data sharing for chronic disease surveillance. IMPLEMENTATION: MENDS governance was cocreated with data contributors and health departments representing Texas, New Orleans, Louisiana, Chicago, Washington, and Indiana through engagement from 2020 to 2022. MENDS convened a governance body, executed data-sharing agreements, and developed a master governance document to codify policies and procedures. RESULTS: The MENDS governance committee meets regularly to develop policies and procedures on data use and access, timeliness and quality, validation, representativeness, analytics, security, small cell suppression, software implementation and maintenance, and privacy. Resultant policies are codified in a master governance document. DISCUSSION: The MENDS governance approach resulted in a transparent governance framework that cultivates trust across the network. MENDS's experience highlights the time and resources needed by EHR-based public health surveillance networks to establish effective governance.

Comparison of 3 Devices for 24-Hour Ambulatory Blood Pressure Monitoring in a Nonclinical Environment Through a Randomized Trial.

BACKGROUND: The U.S. Preventive Services Task Force recommends the use of 24-hour ambulatory blood pressure monitoring (ABPM) as part of screening and diagnosis of hypertension. The optimal ABPM device for population-based surveys is unknown. METHODS: We compared the proportion of valid blood pressure (BP) readings, mean awake and asleep BP readings, differences between awake ABPM readings and initial standardized BP readings, and sleep experience among three ABPM devices. We randomized a convenience sample of 365 adults to 1 of 3 ABPM devices: Welch Allyn Mobil-O-Graph (WA), Sun Tech Classic Oscar2 (STO) and Spacelabs 90227 (SL). Participants completed sleep quality questionnaires on the nights before and during ABPM testing. RESULTS: The proportions of valid BP readings were not different among the 3 devices (P > 0.45). Mean awake and asleep systolic BP were significantly higher for STO device (WA vs. STO vs. SL: 126.65, 138.09, 127.44 mm Hg; 114.34, 120.34, 113.13 mm Hg; P < 0.0001 for both). The difference between the initial average standardized mercury systolic BP readings and the ABPM mean awake systolic BP was larger for STO device (WA vs. STO. vs. SL: -5.26, -16.24, -5.36 mm Hg; P < 0.0001); diastolic BP mean differences were ~ -6 mm Hg for all 3 devices (P = 0.6). Approximately 55% of participants reported that the devices interfered with sleep; however, there were no sleep differences across the devices (P > 0.4 for all). CONCLUSION: Most of the participants met the threshold of 70% valid readings over 24 hours. Sleep disturbance was common but did not interfere with completion of measurement in most of the participants.

Personally Identifiable Information in State Laws: Use, Release, and Collaboration at Health Departments.

Despite benefits to sharing data among public health programs, confidentiality laws are often presumed to obstruct collaboration or data sharing. We present an overview of the use and release of confidential, personally identifiable information as consistent with public health interests and identify opportunities to align data-sharing procedures with use and release provisions in state laws to improve program outcomes. In August 2013, Centers for Disease Control and Prevention staff and legal researchers from the National Nurse-Led Care Consortium conducted a review of state laws regulating state and local health departments in 50 states and the District of Columbia. Nearly all states and the District of Columbia employ provisions for the general use and release of personally identifiable information without patient consent; disease-specific use or release provisions vary by state. Absence of law regarding use and release provisions was noted. Health departments should assess existing state laws to determine whether the use or release of personally identifiable information is permitted. Absence of direction should not prevent data sharing but prompt an analysis of existing provisions in confidentiality laws.

Provision of test results and posttest counseling at STD clinics in 24 health departments: U.S., 2007.

OBJECTIVE: We determined the demographic and HIV test characteristics of tests conducted in CDC-funded sexually transmitted disease (STD) clinics with provision of test results and posttest counseling. METHODS: We used CDC's HIV Counseling and Testing System data from 2007 for the 24 U.S. health departments that reported test-level data from STD clinics. We calculated and analyzed newly identified HIV positivity and the percentage of tests with provision of test results and posttest counseling (provision of posttest counseling), by demographic and HIV-related characteristics. RESULTS: Of 372,757 tests conducted among people without a previous HIV diagnosis by self-report, provision of posttest counseling was documented for 191,582 (51.4%) HIV tests overall and 1,922 (71.2%) newly identified HIV-positive test results. At these STD clinics, provision of posttest counseling varied by HIV serostatus, age, race/ethnicity, test type, and risk category; however, documentation of posttest counseling was missing for more than 20% of tests. The newly identified HIV positivity among all testers was 0.7%. CONCLUSIONS: One of the main goals of HIV counseling and testing is to inform people of their HIV status, because knowledge of one's HIV-positive serostatus can result in a reduction in risk behaviors and allow the person to access HIV medical care and treatment. STD clinics offering HIV testing may need to further their emphasis on increasing the proportion of clients who are provided posttest counseling and on improving documentation of this information.

Partner Referral by HIV-Infected Persons to Partner Counseling and Referral Services (PCRS) - Results from a Demonstration Project.

OBJECTIVE: The objectives of this article are to determine factors associated with refusal and agreement to provide partner information, and evaluate the effectiveness of referral approaches in offering PCRS. METHODS: Index clients from 5 sites that used 3 different PCRS approaches were interviewed to obtain demographic and risk characteristics and choice of partner referral method for PCRS. Logistic regression was used to assess factors associated with providing partner information. RESULTS: The percentage of index clients who refused to provide partner information varied by site (7% to 88%). Controlling for PCRS approach, index clients who were older than 25 years, male, or reported having male-male sex in the past 12 months were more likely (p <0.01) to refuse to provide partner information. Overall, 72% of named partners referred by index clients were located and offered PCRS. The proportion of partners who were located and offered PCRS differed by referral approach used, ranging from 38% using contract referral (index clients agree to notify their partners within a certain timeframe, else a disease intervention specialist or health care provider will notify them) to 98% using dual referral (index clients notify their partners with a disease intervention specialist or provider present). CONCLUSION: Success in obtaining partner information varied by the PCRS approach used and effectiveness in locating and notifying partners varied by the referral approach selected. These results provide valuable insights for enhancing partner services.

Male circumcision as an HIV prevention intervention in the U.S.: Influence of health care providers and potential for risk compensation.

OBJECTIVE: The study aims to assess the acceptability of male circumcision as an HIV prevention intervention and the potential for risk compensation in the continental U.S. METHODS.: ConsumerStyles 2008 survey was used to identify correlates of 1) a "likely" or "very likely" response among uncircumcised men to "How likely are you to get circumcised if your health care provider told you that circumcision would reduce your chance of becoming HIV infected?" and 2) agreement or neutrality with a statement indicating that given the protective effects of circumcision for heterosexual men shown by research, men do not have to worry about risks like not wearing condoms during sex or having more sex partners (assessed potential for risk compensation). RESULTS: Response rate was 50.6% (10,108/19,996). Overall, 13.1% of uncircumcised men reported they would be likely to get circumcised if their health care provider told them it would reduce the risk of HIV infection through sex with infected women. Nearly 18% of all men responded in a way indicating a potential for risk compensation if circumcised. CONCLUSIONS: Tailored educational materials about the benefits and risks, including risk compensation, associated with male circumcision as an HIV prevention intervention should be made available to health care providers and specific groups.

Acceptability of newborn circumcision to prevent HIV infection in the United States.

BACKGROUND/PURPOSE: To understand whether information from the African clinical trials about the partially protective effect of male circumcision against human immunodeficiency virus (HIV) infection could influence adults to circumcise a newborn son. METHODS: Using the 2008 ConsumerStyles panel survey data, multiple regression analysis was performed to identify correlates of (1) inclination toward circumcising a newborn son and (2) being influenced to have a newborn son circumcised if it would reduce the chance of becoming HIV infected later in life. RESULTS: Response rate was 50.6% (10,108/19,996). Approximately 12% reported not being inclined to circumcise a newborn son. Higher odds of not being inclined to circumcise a newborn son were associated with Hispanic and "other" race/ethnicity, being an uncircumcised man and a man not reporting circumcision status, postgraduate education, region, and negative health-related attitudes. Lower odds were associated with black race and less number of household members. Fifty-three percent of respondents reported that information about the protective effect of circumcision would make them more likely to have a newborn son circumcised. Higher odds of being influenced to have a newborn son circumcised were associated with being ≥45 years of age, black race, living in a household with fewer than 5 members, having high school or some college education, region, and positive health-related attitudes; lower odds were associated with being an uncircumcised man and lower income. CONCLUSIONS: Our findings suggest that providing educational information about the HIV prevention and benefit of circumcision may increase the inclination to circumcise a newborn son for some people.

Costs and effectiveness of partner counseling and referral services with rapid testing for HIV in Colorado and Louisiana, United States.

OBJECTIVE: Health departments offer partner counseling and referral services (PCRS) to HIV-infected index patients and their partners. Point-of-care rapid HIV testing makes it possible for partners of index patients to learn their HIV serostatus in nonclinical settings. STUDY DESIGN: We assessed costs and effectiveness of PCRS with rapid HIV testing in Colorado and Louisiana (April 2004-January 2006). Colorado provided PCRS to the index patients and partners statewide; Louisiana provided PCRS to those in Baton Rouge and New Orleans. The key effectiveness measures were number of partners tested and number of partners informed of a new HIV diagnosis after rapid testing. We obtained program costs for personnel, travel, utilities, supplies, equipment, and facility space. RESULTS: Colorado identified a yearly average of 328 index patients and 253 partners and tested 43 partners. Louisiana identified a yearly average of 81 index patients and 138 partners and tested 83 partners. The rates of previously undiagnosed HIV infection among partners tested were 6.6% in Colorado and 9.9% in Louisiana. The average costs per partner tested and per partner informed of a new HIV diagnosis were $1459 and $22,243 in Colorado and $714 and $7231 in Louisiana. CONCLUSIONS: Program costs varied substantially by location. Our analysis helps program managers and health care providers to understand the resources needed for implementing the PCRS in diverse settings.

Willingness of men who have sex with men (MSM) in the United States to be circumcised as adults to reduce the risk of HIV infection.

BACKGROUND: Circumcision reduces HIV acquisition among heterosexual men in Africa, but it is unclear if circumcision may reduce HIV acquisition among men who have sex with men (MSM) in the United States, or whether MSM would be willing to be circumcised if recommended. METHODS: We interviewed presumed-HIV negative MSM at gay pride events in 2006. We asked uncircumcised respondents about willingness to be circumcised if it were proven to reduce risk of HIV among MSM and perceived barriers to circumcision. Multivariate logistic regression was used to identify covariates associated with willingness to be circumcised. RESULTS: Of 780 MSM, 133 (17%) were uncircumcised. Of these, 71 (53%) were willing to be circumcised. Willingness was associated with black race (exact odds ratio [OR]: 3.4, 95% confidence interval [CI]: 1.3-9.8), non-injection drug use (OR: 6.1, 95% CI: 1.8-23.7) and perceived reduced risk of penile cancer (OR: 4.7, 95% CI: 2.0-11.9). The most commonly endorsed concerns about circumcision were post-surgical pain and wound infection. CONCLUSIONS: Over half of uncircumcised MSM, especially black MSM, expressed willingness to be circumcised. Perceived risks and benefits of circumcision should be a part of educational materials if circumcision is recommended for MSM in the United States.

Incorporating rapid HIV testing into partner counseling and referral services.

OBJECTIVES: Partner counseling and referral services (PCRS) provide a unique opportunity to decrease transmission of human immunodeficiency virus (HIV) by notifying sex and drug-injection partners of HIV-infected individuals of their exposure to HIV. We incorporated rapid HIV testing into PCRS to reduce barriers associated with conventional HIV testing and identify undiagnosed HIV infection within this high-risk population. METHODS: From April 2004 through June 2006, HIV-infected people (index clients) were interviewed, and their partners were notified of their potential exposure to HIV and offered rapid HIV testing at six sites in the United States. The numbers of index clients participating and the numbers of partners interviewed and tested were compared by site. Descriptive and bivariate analyses were performed. RESULTS: A total of 2,678 index clients were identified, of whom 779 (29%) provided partner locating information. A total of 1,048 partners were elicited, of whom 463 (44%) were both interviewed and tested for HIV. Thirty-seven partners (8%) were newly diagnosed with HIV. The number of index clients interviewed to identify one partner with newly diagnosed HIV infection ranged from 10 to 137 at the participating sites. CONCLUSIONS: PCRS provides testing and prevention services to people at high risk for HIV infection. Incorporating rapid HIV testing into PCRS and identifying previously undiagnosed infections likely confer individual and public health benefits. Further evaluation is needed to determine the best methods of identifying partners with previously unrecognized HIV infection.

Patient and regimen characteristics associated with self-reported nonadherence to antiretroviral therapy.

BACKGROUND: Nonadherence to antiretroviral therapy (ARVT) is an important behavioral determinant of the success of ARVT. Nonadherence may lead to virological failure, and increases the risk of development of drug resistance. Understanding the prevalence of nonadherence and associated factors is important to inform secondary HIV prevention efforts. METHODOLOGY/PRINCIPAL FINDINGS: We used data from a cross-sectional interview study of persons with HIV conducted in 18 U.S. states from 2000-2004. We calculated the proportion of nonadherent respondents (took <95% of prescribed doses in the past 48 hours), and the proportion of doses missed. We used multivariate logistic regression to describe factors associated with nonadherence. Nine hundred and fifty-eight (16%) of 5,887 respondents reported nonadherence. Nonadherence was significantly (p<0.05) associated with black race and Hispanic ethnicity; age <40 years; alcohol or crack use in the prior 12 months; being prescribed >or=4 medications; living in a shelter or on the street; and feeling "blue" >or=14 of the past 30 days. We found weaker associations with having both male-male sex and injection drug use risks for HIV acquisition; being prescribed ARVT for >or=21 months; and being prescribed a protease inhibitor (PI)-based regimen not boosted with ritonavir. The median proportion of doses missed was 50%. The most common reasons for missing doses were forgetting and side effects. CONCLUSIONS/SIGNIFICANCE: Self-reported recent nonadherence was high in our study. Our data support increased emphasis on adherence in clinical settings, and additional research on how providers and patients can overcome barriers to adherence.

Enrollment of racial/ethnic minorities and women with HIV in clinical research studies of HIV medicines.

PURPOSE: Inclusion of women and racial/ethnic minorities is a requirement for federally supported clinical research, but data on clinical research participation from women and racial/ethnic minorities with HIV are few. To describe participation in clinical research of HIV medicines among women and racial/ethnic minorities, and associated factors, we used data from a cross-sectional behavioral surveillance interview project conducted in 15 U.S. states. METHODS: Data were from 6,892 persons living with HIV infection, recruited in facilities in seven U.S. states and using population-based methods in eight other states, between 2000-2004. We calculated self-reported participation in a clinical research study of HIV medicines, factors associated with self-reported study participation among men and women, and reasons for not participating in a study among nonparticipants. MAIN FINDINGS: Overall, 17% of respondents had ever participated in a clinical research study. For men, the odds of participation were lower for black or Hispanic men (versus white men) and were higher for men whose risk for HIV infection was male-male sex (versus men with male-female sex risk) and for men with AIDS. For men who had not participated in a study, black men were more likely than white men to report not participating in a study because they were unaware of available studies or were not offered enrollment (75% vs. 69%), and because they did not want to be a "guinea pig" (11% vs. 8%). Among women, participation was not associated with race/ethnicity or risk for HIV infection but was associated with living in an area with an NIH- or CDC- supported clinical research network. HIV-infected women were more likely than HIV-infected men with comparable modes of HIV acquisition to have participated in a study. CONCLUSIONS: Among persons with HIV interviewed in these 15 states, self-reported participation in clinical research studies was higher among women than men, but racial/ethnic minority men were less likely to report study participation. Our data suggest that clinicians and researchers should make increased efforts to offer study participation to racial and ethnic minority men.

Changes in HIV and AIDS in the United States: Entering the Third Decade.

The epidemiology of the HIV transmission in the United States has changed considerably since the epidemic began. Our increased understanding of the virus has fostered development of new treatments to prolong life, and vaccine research has increased hope for those at risk in both developed and less developed countries. In this review, we provide information about current trends in HIV and AIDS among those in the United States most affected by the epidemic.

HIV testing and awareness of care-related services among a group of HIV-positive Asian Americans and Pacific Islanders in the United States: findings from a supplemental HIV/AIDS surveillance project.

Compared with other racial/ethnic groups in the United States, Asian Americans and Pacific Islanders (AAPIs) are more likely to be at an advanced stage of AIDS disease and have opportunistic infections at the time of diagnosis. However, it is not clear how these two findings are related to issues such as HIV testing and access to HIV care-related services. We examined HIV testing and awareness of care-related services among a group of HIV-positive AAPIs in the United States. Data are from a multisite supplemental surveillance project, 1990-1999. Compared with Whites, a higher percentage of AAPIs cited "illness" as the main reason for HIV testing and had their tests done as a hospital inpatients--although these differences were not statistically significant. A significantly lower percentage of AAPIs than Whites were aware of their current CD4 count; AAPIs also had significantly lower awareness about a number of care-related services. Among AAPIs, educational level was positively associated with awareness of these services. Efforts are needed to promote service availability among HIV-positive AAPIs.

Changes in HIV and AIDS in the United States: entering the third decade.

The epidemiology of the HIV transmission in the United States has changed considerably since the epidemic began. Our increased understanding of the virus has fostered development of new treatments to prolong life, and vaccine research has increased hope for those at risk in both developed and less developed countries. In this review, we provide information about current trends in HIV and AIDS among those in the United States most affected by the epidemic.

Older partners and STD prevalence among pregnant African American teens.

BACKGROUND: Several recent studies have addressed the question of whether adolescent females who have sex with older partners have a greater risk of sexually transmitted disease (STD) acquisition. GOAL: The goal was to identify differences in STD prevalence and selected measures of behavioral risk between unmarried pregnant African American adolescent females reporting sex with older partners and those reporting sex with similar-age partners. STUDY DESIGN: Adolescents (n = 169) were recruited during their first prenatal visit. Adolescents completed a self-administered survey and a face-to-face interview and provided urine specimens for nucleic acid amplification assays. RESULTS: Approximately 65% of adolescents reported that their male sex partners were >/=2 years older, while 35% reported having similar-age male sex partners. In age-adjusted analyses, adolescents with older partners were four times more likely to test positive for chlamydia (P < 0.04) and were more than twice as likely to report that their partner was also having sex with other women (P < 0.04). With use of a 30-day recall period, the mean number of unprotected vaginal sexual encounters among adolescents with older partners was 4.1, as compared to a mean of 6.9 among those reporting similar-age partners; this difference approached significance (P = 0.051). Prevalence of trichomoniasis as well as scale measures of adolescents' self-efficacy for condom negotiation and frequency of sexual communication with partners did not differ between those adolescents with older or similar-age male sex partners. CONCLUSION: In resource-constrained clinical settings, one implication of these findings is that pregnant adolescents reporting older partners may be a priority for targeted delivery of partner services. More frequent screening for chlamydia may also be cost-effective for pregnant adolescents with older partners.