Evaluation of the Texas Birth Defects Registry: an active surveillance system

BACKGROUND: Evaluations of surveillance systems are necessary to determine if the goals of the system are being met, how efficiently the surveillance is being implemented, and if resources are being used appropriately. An evaluation of the Texas Birth Defects Registry was conducted to assess the overall quality of data collection and to examine variations across regions of the state. METHODS: The registry was evaluated by using published guidelines for evaluating public health surveillance systems; the evaluation included staff interviews, process observation, and secondary data analysis. RESULTS: The registry monitors >370,000 births/year through active surveillance, with considerable disparities in workload across regions of the state. Because of the geographic size and substantial population of Texas, data collection is complex. However, the estimated sensitivity of the system appears sufficient, and rates for selected defects are highly comparable with other U.S. active birth-defect surveillance systems. Registry staff continually monitor the quality of data collection and provide additional training. Amid unstable funding, the registry staff have demonstrated optimal foresight and flexibility to adapt and continue quality data collection. Timeliness needs to be improved and more consistent quality assurance is needed across regions of the state. Retaining staff and increasing visibility are essential to providing more stability. CONCLUSIONS: Active surveillance for birth defects is labor-intensive but provides invaluable data for its stakeholders. The Texas Birth Defects Registry has proven to be a quality surveillance system and a beneficial resource for Texas.     

DISASTER MEDICAL CARE AND SHELTER-The Federal Program

The role of the physician in event of natural disaster or overwhelming (perhaps nuclear) attack by an enemy is:To assist the layman in preparing to meet his own health needs in a disaster situation until organized health services can reach him. To prepare and plan for the provision of organized medical care when conditions permit. To extend his own capability to render medical care outside his normal specialty. To assist in the training of allied and professional health workers and laymen for specific mobilization assignments in health services.     

DISASTER MEDICAL CARE AND SHELTER—The Federal Program

The role of the physician in event of natural disaster or overwhelming (perhaps nuclear) attack by an enemy is:To assist the layman in preparing to meet his own health needs in a disaster situation until organized health services can reach him.To prepare and plan for the provision of organized medical care when conditions permit.To extend his own capability to render medical care outside his normal specialty.To assist in the training of allied and professional health workers and laymen for specific mobilization assignments in health services.     

Symptomatic Dengue Disease in Five Southeast Asian Countries: Epidemiological Evidence from a Dengue Vaccine Trial

Dengue incidence has increased globally, but empirical burden estimates are scarce. Prospective methods are best-able to capture all severities of disease. CYD14 was an observer-blinded dengue vaccine study conducted in children 2–14 years of age in Indonesia, Malaysia, Thailand, the Philippines, and Vietnam. The control group received no vaccine and resembled a prospective, observational study. We calculated the rates of dengue according to different laboratory or clinical criteria to make inferences about dengue burden, and compared with rates reported in the passive surveillance systems to calculate expansion factors which describe under-reporting. Over 6,933 person-years of observation in the control group there were 319 virologically confirmed dengue cases, a crude attack rate of 4.6%/year. Of these, 92 cases (28.8%) were clinically diagnosed as dengue fever or dengue hemorrhagic fever by investigators and 227 were not, indicating that most symptomatic disease fails to satisfy existing case definitions. When examining different case definitions, there was an inverse relationship between clinical severity and observed incidence rates. CYD14’s active surveillance system captured a greater proportion of symptomatic dengue than national passive surveillance systems, giving rise to expansion factors ranging from 0.5 to 31.7. This analysis showed substantial, unpredictable and variable under-reporting of symptomatic dengue, even within a controlled clinical trial environment, and emphasizes that burden estimates are highly sensitive to case definitions. These data will assist in generating disease burden estimates and have important policy implications when considering the introduction and health economics of dengue prevention and control interventions.     

A call from justice to support the people in Gaza

Using Madison Powers and Ruth Faden's definition of ‘well‐being,’ the authors argue that Israel, the international community and public health practitioners have a justice‐based obligation to assist the Palestinian people in the Occupied Palestinian Territories. Focusing on Palestinians in Gaza, the authors first outline a normative framework of justice, as articulated by Powers and Faden. Following Powers and Faden's assumption that empirical assessments of justice can be made using the six dimensions of well‐being, the authors next present current data on the living conditions in Gaza and describe how these conditions prevent residents from achieving sufficient levels of well‐being. Using these indicators to demonstrate that Palestinians living in Gaza suffer deficiencies in these dimensions of well‐being, the authors present a strong argument from justice to assist the residents of Gaza. The medical, public health, and bioethics community cannot sit idle while injustice continues.     

Expert systems in treating substance abuse.

Computer programs can assist humans in solving complex problems that cannot be solved by traditional computational techniques using mathematic formulas. These programs, or "expert systems," are commonly used in finance, engineering, and computer design. Although not routinely used in medicine at present, medical expert systems have been developed to assist physicians in solving many kinds of medical problems that traditionally require consultation from a physician specialist. No expert systems are available specifically for drug abuse treatment, but at least one is under development. Where access to a physician specialist in substance abuse is not available for consultation, this expert system will extend specialized substance abuse treatment expertise to nonspecialists. Medical expert systems are a developing technologic tool that can assist physicians in practicing better medicine.     

Determination of the Blood,Hormone and Obesity Value Ranges that Indicate the Breast Cancer,Using Data Mining Based Expert System

Breast cancer is a dangerous type of cancer that spreads into other organs over time. Therefore, medical studies are being done for the early diagnosis by means of the anthropometric data and blood analysis values besides the mammographic and histological findings. However, medical studies have identified only cancer-related values but the value ranges indicating the cancer have not been determined yet. Concurrently the automated diagnostic systems are being developed to assist medical specialists in biomedical engineering studies. The range of values or boundaries indicating the cancer are automatically determined in biomedical methods, but only the diagnostic result is presented. Because of this, biomedical studies don't provide enough opportunity for medical experts to evaluate the relationship between values and result. In this study, decision trees that is one of data mining method was applied to anthropometric data and blood analysis values to complete the mentioned deficiencies in breast cancer diagnosis aiming studies. The determined value ranges were also presented visually to medical experts understand them easily. The proposed diagnostic system has accuracy rate up to 90.52% and provides value ranges indicating the breast cancer as well as mathematically presents the relations between the values and cancer.     

The Organization for Disaster in British Columbia

Plans are being formulated for organizing an Emergency Health Service in British Columbia. The same organization that is being created to deal with civilian casualties after an enemy attack should, it is felt, be able to assist in major natural disasters. Such an organization will have to remain ready but inactive for long periods; therefore the responsibility for planning, organizing and directing this service has been given to the Health Branch, Provincial Department of Health Services and Hospital Insurance.A committee has been struck to advise the Health Branch, and a Director and a Health Supplies Officer have been appointed. Agreement has been reached as to who is to be assigned to work in the Emergency Health Service in the event of a nuclear attack, and sites have been selected for the stockpiling of medical equipment.The Province has been divided into zones, and Emergency Health Service Directors have been appointed for each zone. Their duties include, among many others, organizing Advanced Treatment Centres and Emergency Hospitals, and developing an Emergency Public Health Service, an Emergency Blood Transfusion Laboratory and a Mortuary Service.     

Reassessing Google Flu Trends Data for Detection of Seasonal and Pandemic Influenza: A Comparative Epidemiological Study at Three Geographic Scales

The goal of influenza-like illness (ILI) surveillance is to determine the timing, location and magnitude of outbreaks by monitoring the frequency and progression of clinical case incidence. Advances in computational and information technology have allowed for automated collection of higher volumes of electronic data and more timely analyses than previously possible. Novel surveillance systems, including those based on internet search query data like Google Flu Trends (GFT), are being used as surrogates for clinically-based reporting of influenza-like-illness (ILI). We investigated the reliability of GFT during the last decade (2003 to 2013), and compared weekly public health surveillance with search query data to characterize the timing and intensity of seasonal and pandemic influenza at the national (United States), regional (Mid-Atlantic) and local (New York City) levels. We identified substantial flaws in the original and updated GFT models at all three geographic scales, including completely missing the first wave of the 2009 influenza A/H1N1 pandemic, and greatly overestimating the intensity of the A/H3N2 epidemic during the 2012/2013 season. These results were obtained for both the original (2008) and the updated (2009) GFT algorithms. The performance of both models was problematic, perhaps because of changes in internet search behavior and differences in the seasonality, geographical heterogeneity and age-distribution of the epidemics between the periods of GFT model-fitting and prospective use. We conclude that GFT data may not provide reliable surveillance for seasonal or pandemic influenza and should be interpreted with caution until the algorithm can be improved and evaluated. Current internet search query data are no substitute for timely local clinical and laboratory surveillance, or national surveillance based on local data collection. New generation surveillance systems such as GFT should incorporate the use of near-real time electronic health data and computational methods for continued model-fitting and ongoing evaluation and improvement.     

Giardia: an under-reported foodborne parasite

Foodborne zoonotic pathogens are a serious public health issue and result in significant global economic losses. Despite their importance to public health, epidemiological data on foodborne diseases including giardiasis caused by the enteric parasite, Giardia duodenalis, are lacking. This parasite is estimated to cause ～28.2 million cases of diarrhoea each year due to contamination of food, but very few foodborne outbreaks have been documented due to the limitations of current detection as well as surveillance methods. The current method for the recovery of Giardia cysts from food matrices using immunomagnetic separation requires further standardisation and cost reduction before it can be widely used. It also should incorporate downstream molecular procedures for genotyping, and traceback and viability analyses. Foodborne giardiasis can be potentially controlled through improvements in national disease surveillance systems and the establishment of Hazard Analysis and Critical Control Point interventions across the food chain. Studies are needed to assess the true prevalence and public health impact of foodborne giardiasis.     

Mosquito-Associated Viruses in China

Mosquitoes are classified into approximately 3500 species and further grouped into 41 genera. Epidemiologically, they are considered to be among the most important disease vectors in the world and they can harbor a wide variety of viruses. Several mosquito viruses are considered to be of significant medical importance and can cause serious public health issues throughout the world. Such viruses are Japanese encephalitis virus (JEV), dengue virus (DENV), chikungunya virus (CHIKV), and Zika virus (ZIKV). Others are the newly recognized mosquito viruses such as Banna virus (BAV) and Yunnan orbivirus (YNOV) with unclear medical significance. The remaining mosquito viruses are those that naturally infect mosquitoes but do not appear to infect humans or other vertebrates. With the continuous development and improvement of mosquito and mosquito-associated virus surveillance systems in China, many novel mosquito-associated viruses have been discovered in recent years. This review aims to systematically outline the history, characteristics, distribution, and/or current epidemic status of mosquito-associated viruses in China.     

Medicaid and the Mainstream: Reassessment in the Context of the Taxpayer Revolt

California''s Medicaid program—Medi-Cal—attempted to implement the ideal of mainstream medical care for the poor by giving program beneficiaries a “credit card” for use in the private health care marketplace. This exposed the program to the perverse economic incentives of the fee-for-service, costplus health care system, and contributed to a high rate of increase in program costs. Attempts to control costs have been equally perverse, resulting in low payment rates, the second-guessing of physician professional judgments, the probing of medical and fiscal records, and the use of computerized surveillance systems.Attempts to shift to the use of more efficient delivery systems have had small success. Attempts to attain cost containment through restructuring the Medi-Cal program have been rejected in the name of the mainstream ideal. Costs have continued to escalate, with annual increases as high as 20 percent in some years. Medi-Cal now costs $4 billion per year, the largest single program in California state government.The taxpayer revolt in California is creating a fiscal crisis that will force rethinking of the premises of publicly funded health care for the poor, and a restructuring of strategies for reaching that objective. In the short run, it appears that the issue may not be whether the indigent will have access to mainstream medical care, but whether they will have access to any medical care. In the longer run, the crisis should represent an opportunity for building a system of health care that can serve the financially disadvantaged at a cost tolerable to our society.     

Measurements of birth defect prevalence: Which is most useful as a comparator group for pharmaceutical pregnancy registries?

Pharmaceutical pregnancy registries document birth defects and other complications reported in pregnancies exposed to specific medications or diseases. A baseline estimate of birth defect prevalence is necessary for comparison. To identify potential teratogenic signals, the pregnancy registry must have a comparator that most closely matches the exposed population and data collection methodology, which are characteristics that vary among the multiplicity of birth defect surveillance systems. The system that yields the most accurate prevalence data may be different from that most closely matching the pregnancy registry methods. State public health programs have highly accurate and precise statistics, but their populations are broader than those of a pharmaceutical pregnancy registry. Large collaborative databases may have a more useful covered population, but there are secondary problems related to data precision. Health care databases enroll large numbers of patients and have good information about exposures and health problems, but the data can be difficult to access and lack useful detail. Exposure‐related databases are closer in population definition and collection methods, though the presence of different diseases and exposures can be problematic. Internal comparators are likely to be most useful in formal statistical analysis, but added cost and management burden and may require significantly increased registry enrollment. There is no ideal comparator, and this must be taken into account when planning a single‐exposure or single‐disease pregnancy registry. Birth Defects Research (Part A), 2009. © 2009 Wiley‐Liss, Inc.     

DISASTER CARE FOR 15 MILLION CALIFORNIANS

The urgency of the crisis following a nuclear attack staggers the imagination. We would have thousands or millions of survivors making a desperate struggle to survive. Safe water supplies and waste-disposal systems would be gone. In some areas, there would be little or no food or shelter.Yet California has already manned a medical arsenal that is second to none in the United States. We have stored 115 emergency hospitals at strategic points, and through the county medical associations we have appointed cadres including physicians, nurses and technicians. Plans have been made for workers who will assist in setting up the hospitals and first aid stations.In our future operations we will continue to place strong emphasis on the medical phase of our program of disaster care.The program would be just as essential in the event of major natural disaster as nuclear war.Our objective is a simple one. We are seeking to preserve the human resources which are necessary for recovery.California''s medical profession, with the allied professions of nursing and technical skills, has a vital interest in continuing operations to the maximum extent even under the most trying conditions.     

Application of space technologies to the surveillance and modelling of waterborne diseases

Earth observing satellites, global positioning and geographic information systems are new tools that currently enable the scientific community to integrate ecological, environmental and medical data to develop predictive models for disease surveillance and modelling. A number of investigators have explored remotely sensed environmental factors that might be associated with waterborne disease ecology and human transmission risk. However, health specialists have not been fully familiarized with the capabilities of space technology, and in some cases it has not proved to be the wonder tool that scientists expected. New satellite capabilities and new sensors now allow exploration of risk factors previously beyond the capabilities of remote sensing and put researchers in a position to analyze the effects of environment on disease outbreaks.     

The Effectiveness of U.S. Public Health Surveillance Systems for Situational Awareness during the 2009 H1N1 Pandemic: A Retrospective Analysis

Background

The 2009 H1N1 outbreak provides an opportunity to learn about the strengths and weaknesses of current U.S. public health surveillance systems and to identify implications for measuring public health emergency preparedness.

Methodology/Principal Findings

We adopted a “triangulation” approach in which multiple contemporary data sources, each with different expected biases, are compared to identify time patterns that are likely to reflect biases versus those that are more likely to be indicative of actual infection rates. This approach is grounded in the understanding that surveillance data are the result of a series of decisions made by patients, health care providers, and public health professionals about seeking and providing health care and about reporting cases to health authorities. Although limited by the lack of a gold standard, this analysis suggests that children and young adults are over-represented in many pH1N1 surveillance systems, especially in the spring wave. In addition, the nearly two-month delay between the Northeast and the South in the Fall peak in some surveillance data seems to at least partially reflect regional differences in concerns about pH1N1rather than real differences in pH1N1 infection rates.

Conclusions/Significance

Although the extent of the biases suggested by this analysis cannot be known precisely, the analysis identifies underlying problems with surveillance systems – in particular their dependence on patient and provider behavior, which is influenced by a changing information environment – that could limit situational awareness in future public health emergencies. To improve situational awareness in future health emergencies, population-based surveillance systems such as telephone surveys of representative population samples and seroprevalence surveys in well-defined population cohorts are needed.     

Alberta Congenital Anomalies Surveillance System.

The Alberta Congenital Anomalies Surveillance System was started in 1966 in response to the thalidomide tragedy earlier in the decade. It was one of four provincial surveillance systems on which the federal government relied for baseline statistics of congenital anomalies. The government now collects data from six provinces and one territory. The Alberta Congenital Anomaly Surveillance System originally depended on three types of notification to the Division of Vital Statistics, Department of Health, Government of Alberta: birth notice and certificates of death and stillbirth; increased sources of ascertainment have greatly improved data quality. We present the data for 1980-86 and compare the prevalence rates of selected anomalies with the rates from three other surveillance systems. Surveillance systems do not guarantee that a new teratogen will be detected, but they are extremely valuable for testing hypotheses regarding causation. At the very least they provide baseline data with which to compare any deviation or trend. For many, if not most, congenital anomalies total prevention is not possible; however, surveillance systems can be used to measure progress in prevention.     

Collection, use, and protection of population-based birth defects surveillance data in the united states

Birth defects surveillance systems collect population-based birth defects data from multiple sources to track trends in prevalence, identify risk factors, refer affected families to services, and evaluate prevention efforts. Strong state and federal public health and legal mandates are in place to govern the collection and use of these data. Despite the prima facie appeal of "opt-in" and similar strategies to those who view data collection as a threat to privacy, the use of these strategies in lieu of population-based surveillance can severely limit the ability of public health agencies to accurately access the health status of a group within a defined geographical area. With the need for population-based data central to their mission, birth defects programs around the country take their data stewardship role seriously, recognizing both moral and legal obligations to protect the data by employing numerous safeguards. Birth defects surveillance systems are shaped by the needs of the community they are designed to serve, with the goal of preventing birth defects or alleviating the burdens associated with them.     

Monitoring and surveillance for rare health-related events: a review from the veterinary perspective

Disease monitoring and surveillance systems (MOSSs) have become one of the major components of veterinary activity. Such systems are used to assess the existing levels of prevalence, the effectiveness of control programmes and, after disease eradication, to document the continued absence of disease from a given region or zone. With decreasing disease or infection prevalence, traditional approaches become less reliable and increasingly costly. The objective of this work was to summarize and discuss methodological issues related to veterinary (animal health) MOSSs. There are considerable inconsistencies in the use of the terms 'monitoring' and 'surveillance'. Passive as well as active MOSS have their disadvantages when used for rare health-related events such as emerging and re-emerging diseases. There is a need for evaluation and improvement of these approaches. Integrated systems that call for the use of several parallel surveillance activities seem to be the favoured approach, and analytical methods to combine MOSS data from various sources into a population prevalence, or probability of disease freedom, are under development. The health and safety of the animal and human generations depends on our continuous ability to detect, monitor and control newly emerging or re-emerging livestock diseases and zoonoses rapidly. Uniform surveillance definitions, sound scientifically based approaches that use the resources and data available, and a pool of researchers and veterinary public health officials with sufficient training in epidemiology, are critically important to handle this challenging task.     

Health Data and the Physician

California Health Data Corporation was formed to create better health data resources under the direction of hospitals and medicine. Highest priority is being given to developing information systems that will serve physicians, as well as those who are usually considered health data users. This is illustrated in CHD''s first major activity, sponsorship of a medical record information system for California hospitals. This system is designed first of all to provide better information for medical staff committees, and as a byproduct to provide data flow into a CHD data bank. For the practicing physician, the significance of CHD is that the organization will attempt to develop information systems that will help the medical profession maintain its central role in guiding the present and future patterns of health care.