Last data update: Mar 17, 2025. (Total: 48910 publications since 2009)
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Fostering governance and information partnerships for chronic disease surveillance: The Multi-State EHR-Based Network for Disease Surveillance
Kraus EM , Saintus L , Martinez AK , Brand B , Begley E , Merritt RK , Hamilton A , Rubin R , Sullivan A , Karras BT , Grannis S , Brooks IM , Mui JY , Carton TW , Hohman KH , Klompas M , Dixon BE . J Public Health Manag Pract 2024 30 (2) 244-254 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. |
Notes from the field: Gastrointestinal illness among hikers on the Pacific Crest Trail - Washington, August-October 2022
Hamlet A , Begley K , Miko S , Stewart L , Tellier W , Gonzalez-De Leon J , Booth H , Lippman S , Kahler A , Roundtree A , Hatada A , Lindquist S , Melius B , Goldoft M , Mattioli M , Holshue M . MMWR Morb Mortal Wkly Rep 2023 72 (36) 997-998 On August 26, 2022, the Washington State Department of Health received informal reports of numerous Pacific Crest Trail hikers with acute gastroenteritis (AGE). The Pacific Crest Trail stretches 2,650 miles from California to Washington, attracting hikers from around the world (1). An investigation of social media postings on September 5 found 27 reports of AGE by Washington Pacific Crest Trail hikers during the previous month, 26 of whom provided information about symptom onset date (Figure). Numerous additional reports without a specific date were found, suggesting that that AGE was occurring during the 2022 hiking season |
Prevalence and clinical outcomes of respiratory syncytial virus versus influenza in adults hospitalized with acute respiratory illness from a prospective multicenter study
Begley KM , Monto AS , Lamerato LE , Malani AN , Lauring AS , Talbot HK , Gaglani M , McNeal T , Silveira FP , Zimmerman RK , Middleton DB , Ghamande S , Murthy K , Kim L , Ferdinands JM , Patel MM , Martin ET . Clin Infect Dis 2023 BACKGROUND: Current understanding of severe RSV infections in adults is limited by clinical under-recognition. We compared the prevalence, clinical characteristics, and outcomes of RSV infections vs influenza in adults hospitalized with acute respiratory illnesses in a prospective national surveillance network. METHODS: Hospitalized adults who met a standardized ARI case definition were prospectively enrolled across three respiratory seasons from hospitals participating across all sites of the U.S. Hospitalized Adult Influenza Vaccine Effectiveness Network (HAIVEN, 2016-2019). All participants were tested for RSV and influenza by RT-PCR. Multivariable logistic regression was used to test associations between laboratory-confirmed infection and characteristics and clinical outcomes. RESULTS: Among 10,311 hospitalized adults, 6% tested positive for RSV (n=622), 18.8% positive for influenza (n=1,940), and 75.1% negative for RSV and influenza (n=7,749). Congestive Heart Failure (CHF) or Chronic Obstructive Pulmonary Disease (COPD) was more frequent among adults with RSV than influenza (CHF: 37.3% vs. 28.8%, p<0.0001; COPD: 47.6% vs. 35.8%, p<0.0001). Patients with RSV more frequently had longer admissions [OR=1.38 (95% CI: 1.06-1.80) for stays >one week] and mechanical ventilation [OR=1.45 (95% CI: 1.09-1.93)] compared with influenza, but not compared to the influenza negative group [OR=1.03 (95% CI: 0.82-1.28); OR=1.17 (0.91-1.49), respectively.]. CONCLUSIONS: The prevalence of RSV across three recent respiratory illness seasons was considerable. Our findings suggest those with RSV might incur worse outcomes than influenza in hospitalized adults and frequently have pre-existing cardiopulmonary conditions. This study informs future vaccination strategies and underscores a need for RSV surveillance among adults experiencing severe ARI. |
Comparison of three devices for 24-hour ambulatory blood pressure monitoring in a nonclinical environment through a randomized trial
Nwankwo T , Coleman King SM , Ostchega Y , Zhang G , Loustalot F , Gillespie C , Chang TE , Begley EB , George MG , Shimbo D , Schwartz JE , Muntner P , Kronish IM , Hong Y , Merritt R . Am J Hypertens 2020 33 (11) 1021-1029 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. OBJECTIVE: Among three ABPM devices, we compared the proportion of valid BP readings, mean awake and asleep BP readings, differences between awake ABPM readings and initial standardized BP readings, and sleep experience. RESULTS: The proportions of valid blood pressure readings were not different among the three devices ( p > 0.45). Mean awake and asleep systolic BP were significantly higher for STO device (WA vs. STO vs. SL: 126.65 mmHg, 138.09 mmHg, 127.44 mmHg; 114.34 mmHg, 120.34 mmHg, 113.13 mmHg; 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 mmHg, -16.24 mmHg, -5.36 mmHg; p <0.0001); diastolic BP mean differences were ~ -6 mmHg for all three 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. |
Kinetics of antibody response to influenza vaccination in renal transplant recipients
Gangappa S , Wrammert J , Wang D , Li ZN , Liepkalns JS , Cao W , Chen J , Levine MZ , Stevens J , Sambhara S , Begley B , Mehta A , Pearson TC , Ahmed R , Larsen CP . Transpl Immunol 2019 53 51-60 Annual vaccination is routinely used in organ transplant recipients for immunization against seasonal influenza. However, detailed analysis of the kinetics of vaccine-induced immune responses in this population is lacking. In this study, we investigated the kinetics of vaccine strains-specific antibody responses to trivalent influenza vaccine in a group of renal transplant recipients and a control group. First, we found that the geometric mean hemagglutination inhibition titer against all 3 vaccine strains in the transplant cohort was significantly low when compared to control subjects. Next, whereas the control group sera showed significantly higher HA-specific IgG and isotype IgG1 antibodies at all four time points, a similar increase in the transplant group was delayed until day 28. Interestingly, within the transplant group, subjects receiving belatacept/MMF/prednisone-based regimen had significantly lower levels of total IgG and HA-specific IgG when compared to tacrolimus/MMF/prednisone-based regimen. Even though IgG-ASC response in both cohorts peaked at day 7 post-vaccination, the frequency of IgG-ASC was significantly low in the transplant group. Taken together, our studies show delayed kinetics and lower levels of influenza vaccine-specific antibody responses in renal transplant recipients and, more importantly, indicate the need to probe and improve current vaccination strategies in renal transplant recipients. |
Personally identifiable information in state laws: Use, release, and collaboration at health departments
Begley EB , Ware JM , Hexem SA , Rapposelli K , Thompson K , Penn MS , Aquino GA . Am J Public Health 2017 107 (8) e1-e5 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. (Am J Public Health. Published online ahead of print June 22, 2017: e1-e5. doi:10.2105/AJPH.2017.303862). |
The Managing Epilepsy Well Network: Advancing epilepsy self-management
Sajatovic M , Jobst BC , Shegog R , Bamps YA , Begley CE , Fraser RT , Johnson EK , Pandey DK , Quarells RC , Scal P , Spruill TM , Thompson NJ , Kobau R . Am J Prev Med 2017 52 S241-s245 Epilepsy, a complex spectrum of disorders, affects about 2.9 million people in the U.S. Similar to other chronic disorders, people with epilepsy face challenges related to management of the disorder, its treatment, co-occurring depression, disability, social disadvantages, and stigma. Two national conferences on public health and epilepsy (1997, 2003) and a 2012 IOM report on the public health dimensions of epilepsy highlighted important knowledge gaps and emphasized the need for evidence-based, scalable epilepsy self-management programs. The Centers for Disease Control and Prevention translated recommendations on self-management research and dissemination into an applied research program through the Prevention Research Centers Managing Epilepsy Well (MEW) Network. MEW Network objectives are to advance epilepsy self-management research by developing effective interventions that can be broadly disseminated for use in people's homes, healthcare providers' offices, or in community settings. The aim of this report is to provide an update on the MEW Network research pipeline, which spans efficacy, effectiveness, and dissemination. Many of the interventions use e-health strategies to eliminate barriers to care (e.g., lack of transportation, functional limitations, and stigma). Strengths of this mature research network are the culture of collaboration, community-based partnerships, e-health methods, and its portfolio of prevention activities, which range from efficacy studies engaging hard-to-reach groups, to initiatives focused on provider training and knowledge translation. The MEW Network works with organizations across the country to expand its capacity, help leverage funding and other resources, and enhance the development, dissemination, and sustainability of MEW Network programs and tools. Guided by national initiatives targeting chronic disease or epilepsy burden since 2007, the MEW Network has been responsible for more than 43 scientific journal articles, two study reports, seven book chapters, and 62 presentations and posters. To date, two programs have been adopted and disseminated by the national Epilepsy Foundation, state Epilepsy Foundation affiliates, and other stakeholders. Recent expansion of the MEW Network membership will help to extend future reach and public health impact. |
Self-management in epilepsy: Why and how you should incorporate self-management in your practice
Helmers SL , Kobau R , Sajatovic M , Jobst BC , Privitera M , Devinsky O , Labiner D , Escoffery C , Begley CE , Shegog R , Pandey D , Fraser RT , Johnson EK , Thompson NJ , Horvath KJ . Epilepsy Behav 2017 68 220-224 Epilepsy presents many challenges for those affected by the disease as well as for family members and providers [1,2]. Epilepsy providers routinely educate and counsel patients on their epilepsy and related health issues. Yet, people with epilepsy spend almost all of their time outside of their doctor’s office. Providers cannot support and monitor treatment adherence, mood, or enhance their patients’ healthful behaviors, coping skills, and quality of life on a daily basis. Providers may also fail to recognize or treat common co-morbidities such as depression, anxiety, cognitive impairment, and sleep disorders that can adversely affect seizure control and quality of life [3–4]. Often lacking a multidisciplinary team, or having insufficient time in clinical encounters, providers cannot fully address these and related psychosocial needs of their patients with epilepsy [5]. Introducing and encouraging access to patients self-management support can address these gaps in care, ultimately transferring “ownership” of care from provider to patient [6,7]. At the individual level, self-management aims to increase patients’ skills and confidence in monitoring symptoms, problem-solving, decision-making, goal-setting, communicating, and adopting healthful behaviors to improve health and quality of life [8–11]. Self-management is a partnership between the patient and provider, incorporating patients’ preferences and goals—making it patient-centered. Self-management also facilitates positive health—inclusive of physical, mental, and social resources that actively promote well-being [12]. Epilepsy self-management domains (e.g., treatment adherence, tracking seizures and medication side effects, stress reduction, sleep, safety, communication) have been extensively reviewed [10,11,13]. |
Provision of test results and posttest counseling at STD clinics in 24 health departments: U.S., 2007
Begley E , Vanhandel M . Public Health Rep 2012 127 (4) 432-9 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
Song B , Begley EB , Lesondak L , Voorhees K , Esquivel M , Merrick RL , Carrel J , Sebesta D , Vergeront J , Shrestha D , Oraka E , Walker A , Heffelfinger JD . Open AIDS J 2012 6 8-15 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. |
Standards for epidemiologic studies and surveillance of epilepsy
Thurman DJ , Beghi E , Begley CE , Berg AT , Buchhalter JR , Ding D , Hesdorffer DC , Hauser WA , Kazis L , Kobau R , Kroner B , Labiner D , Liow K , Logroscino G , Medina MT , Newton CR , Parko K , Paschal A , Preux PM , Sander JW , Selassie A , Theodore W , Tomson T , Wiebe S . Epilepsia 2011 52 2-26 Worldwide, about 65 million people are estimated to have epilepsy. Epidemiologic studies are necessary to define the full public health burden of epilepsy; to set public health and health care priorities; to provide information needed for prevention, early detection, and treatment; to identify education and service needs; and to promote effective health care and support programs for people with epilepsy. However, different definitions and epidemiologic methods complicate the tasks of these studies and their interpretations and comparisons. The purpose of this document is to promote consistency in definitions and methods in an effort to enhance future population-based epidemiologic studies, facilitate comparison between populations, and encourage the collection of data useful for the promotion of public health. We discuss: (1) conceptual and operational definitions of epilepsy, (2) data resources and recommended data elements, and (3) methods and analyses appropriate for epidemiologic studies or the surveillance of epilepsy. Variations in these are considered, taking into account differing resource availability and needs among countries and differing purposes among studies. 2011 International League Against Epilepsy. |
Acceptability of newborn circumcision to prevent HIV infection in the United States
Gust DA , Kretsinger K , Gaul Z , Pals S , Heffelfinger JD , Begley E , Chen RT , Kilmarx PH . Sex Transm Dis 2011 38 (6) 536-42 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. |
Male circumcision as an HIV prevention intervention in the U.S.: influence of health care providers and potential for risk compensation
Gust DA , Kretsinger K , Pals SL , Gaul ZJ , Hefflefinger JD , Begley EB , Chen RT , Kilmarx PH . Prev Med 2011 52 270-3 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. |
Costs and effectiveness of partner counseling and referral services with rapid testing for HIV in Colorado and Louisiana, United States
Shrestha RK , Begley EB , Hutchinson AB , Sansom SL , Song B , Voorhees K , Busby A , Carrel J , Burgess S . Sex Transm Dis 2009 36 (10) 637-641 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. Copyright copyright 2009 American Sexually Transmitted Diseases Association All rights reserved. |
Disparities in epilepsy: report of a systematic review by the North American Commission of the International League Against Epilepsy
Burneo JG , Jette N , Theodore W , Begley C , Parko K , Thurman DJ , Wiebe S , Task Force on Disparities in Epilepsy Care , North American Commission of the International League Against Epilepsy . Epilepsia 2009 50 (10) 2285-95 PURPOSE: We undertook a systematic review of the evidence on disparities in epilepsy with a focus on North American data (Canada, United States, and the English-speaking Caribbean). METHODS: We identified and evaluated: access to and outcomes following medical and surgical treatment, disability, incidence and prevalence, and knowledge and attitudes. An exhaustive search (1965-2007) was done, including: (1) disparities by socioeconomic status (SES), race/ethnicity, age, or education of subgroups of the epilepsy population; or (2) disparities between people with epilepsy (PWE) and healthy people or with other chronic illnesses. RESULTS: From 1,455 citations, 278 eligible abstracts were identified and 44 articles were reviewed. Comparative research data were scarce in all areas. PWE have been shown to have lower education and employment status; among PWE, differences in access to surgery have been shown by racial/ethnic groups. Aboriginals, women, and children have been shown to differ in use of health resources. Poor compliance has been shown to be associated with lower SES, insufficient insurance, poor relationship with treating clinicians, and not having regular responsibilities. DISCUSSION: Comprehensive, comparative research on all aspects of disparities in epilepsy is needed to understand the causes of disparities and the development of any policies aimed at addressing health disparities and minimizing their impact. |
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