Cancer surveillance using data warehousing, data mining, and decision support systems

This article discusses how data warehousing, data mining, and decision support systems can reduce the national cancer burden or the oral complications of cancer therapies, especially as related to oral and pharyngeal cancers. An information system is presented that will deliver the necessary information technology to clinical, administrative, and policy researchers and analysts in an effective and efficient manner. The system will deliver the technology and knowledge that users need to readily: (1) organize relevant claims data, (2) detect cancer patterns in general and special populations, (3) formulate models that explain the patterns, and (4) evaluate the efficacy of specified treatments and interventions with the formulations. Such a system can be developed through a proven adaptive design strategy, and the implemented system can be tested on State of Maryland Medicaid data (which includes women, minorities, and children).     

The Disability and Wellbeing Monitoring Framework: data,data gaps,and policy implications

Objective : To develop a framework and indicators to monitor inequalities in health and the social determinants of health for Australians with disability. Methods : The development drew on existing frameworks and input from people with lived experience of disability. Results : The Disability and Wellbeing Monitoring Framework has 19 domains. Australian national data are available for 73% of the 128 indicators in these domains. Data gaps and limitations include the absence of national data and the absence of disability identifiers in some data sources. Conclusions : The framework will be used to report baseline data for people with and without disability and to monitor inequalities over time in Australia. It will also be used to locate policy priorities and focus efforts to address data gaps. Implications for public health : Inequality between people with and without disability in relation to health and the social determinants of health is a public health issue that warrants greater attention than it has received to date. The framework provides a robust, evidence‐informed tool to address the health inequalities of people with disability, inform the development of effective policy and practice responses, and monitor change over time.     

Berkson's bias, selection bias, and missing data

Although Berkson's bias is widely recognized in the epidemiologic literature, it remains underappreciated as a model of both selection bias and bias due to missing data. Simple causal diagrams and 2 × 2 tables illustrate how Berkson's bias connects to collider bias and selection bias more generally, and show the strong analogies between Berksonian selection bias and bias due to missing data. In some situations, considerations of whether data are missing at random or missing not at random are less important than the causal structure of the missing data process. Although dealing with missing data always relies on strong assumptions about unobserved variables, the intuitions built with simple examples can provide a better understanding of approaches to missing data in real-world situations.     

Genotyping errors, pedigree errors, and missing data

Our group studied the effects of genotyping errors, pedigree errors, and missing data on a wide range of techniques, with a focus on the role of single-nucleotide polymorphisms (SNPs). Half of our group used simulated data, and half of our group used data from the Collaborative Study on the Genetics of Alcoholism (COGA). The simulated data had no missing genotypes and no genotyping errors, so our group, as a whole, removed data and introduced artificial errors to study the robustness of various techniques. Our teams showed that genotyping errors are less detectable and may have a greater impact on SNPs than on microsatellites, but recently developed methods that account for genotyping errors help reduce false positives, and the assumptions of these methods appear to be supported by observations from repeated genotyping. The ability to detect linkage disequilibrium (LD) was also substantially reduced by missing data; this in turn could affect tagging SNPs chosen to generate haplotypes. In the COGA sample, genotyping measurements were repeated in three ways. First, full-genome screens were performed on three sets of markers: 328 microsatellites, 11,560 SNPs from the Affymetrix GeneChip Mapping 10 K Array marker set, and 4,720 SNPs from the Illumina Linkage III panel. Second, the entire Affymetrix marker set was typed on the same 184 individuals by two different laboratories. Finally, the Affymetrix and Illumina marker panels had 94 SNPs in common. Our teams showed that both SNPs and microsatellites can be readily used to identify pedigree errors, and that SNPs have fewer genotyping errors and a low inconsistency rate. However, a fairly high rate of no-calls, especially for the Affymetrix platform, suggests that the inconsistency rate may be higher than observed.     

面向开放共享的科学数据出版:机遇、挑战与对策

【目的】 对科学数据共享领域科学数据出版的现状进行详细的分析,并提出一些对策建议,以期为相关部门进行科学数据出版管理提供借鉴和参考。【方法】 采用文献调查法、比较法和归纳法归类分析科学数据出版的优势、科学数据共享中推进科学数据出版的机遇和挑战,并在此基础上就科学数据共享中如何更好发展科学数据出版提出几点对策建议。【结果】 科学数据出版在科学数据共享中已成为必然趋势,本研究提出一些发展的对策建议,包括但不限于以下几点:制订促进科学数据出版政策、鼓励科学数据出版试点和合作、探索有效的科学数据出版模式、支持建立专业性数据仓储中心、完善科学数据出版标准、规范数据引用和数据评价。【结论】 科学数据出版成为推动科学数据开放共享的有效方式之一,已受到高度重视。我国应积极探索有效的科学数据出版的途径,创新数据出版模式,充分发挥科学数据的复用价值。     

Justice, law and epidemiological data bases

An understanding of the characteristics of the law in the XXI century, facing a crisis of legitimacy characterized by risk and thus fear as the main lines defining the relationship between the society and science blur, supports the quest for a fair balance between individual protection and public development. This exercise was conducted with epidemiological data bases as its purpose. The interests of society that require data bases to be made available with full information on all aspects of people's lives were examined, in parallel to individual interests that demand the utmost respect for the private life of each member of society. The conclusion is that, in a risk society, the law requires the construction of mechanisms that allow public decision and control by all citizens of level of risk they are willing to accept. For the matter under examination, committees of citizens and experts, as well as grassroots groups, should decide on the construction, inputs and use of data bases. It would also be important to provide all practitioners within the legal system with information related to such subjects as health law.     

Standards for confidentiality, privacy, access, and data security

The American Society for Testing and Materials (ASTM), an accredited standards development organization with a focus on health care informatics, has recently produced a standards document on the principles of confidentiality, privacy, access, and data security. The ASTM subcommittee responsible for this work is ASTM 31.17. The article discusses the link between voluntary health informatics standards and issues such as confidentiality and data security in computerized health information systems.     

Myocarditis and pericarditis: Case definition and guidelines for data collection,analysis, and presentation of immunization safety data

Myocarditis and/or pericarditis (also known as myopericarditis) are inflammatory diseases involving the myocardium (with non-ischemic myocyte necrosis) and/or the pericardial sac. Myocarditis/pericarditis (MPC) may present with variable clinical signs, symptoms, etiologies and outcomes, including acute heart failure, sudden death, and chronic dilated cardiomyopathy. Possible undiagnosed and/or subclinical acute myocarditis, with undefined potential for delayed manifestations, presents further challenges for diagnosing an acute disease and may go undetected in the setting of infection as well as adverse drug/vaccine reactions.The most common causes of MPC are viral, with non-infectious, drug/vaccine associated hypersensitivity and/or autoimmune causes being less well defined and with potentially different inflammatory mechanisms and treatment responses. Potential cardiac adverse events following immunization (AEFIs) encompass a larger scope of diagnoses such as triggering or exacerbating ischemic cardiac events, cardiomyopathy with potential heart failure, arrhythmias and sudden death. The current published experience does not support a potential causal association with vaccines based on epidemiologic evidence of relative risk increases compared with background unvaccinated incidence. The only evidence supporting a possible causal association of MPC with a vaccine comes from case reports.Hypersensitivity MPC as a drug/vaccine induced cardiac adverse event has long been a concern for post-licensure safety surveillance, as well as safety data submission for licensure. Other cardiac adverse events, such as dilated cardiomyopathy, were also defined in the CDC definitions for adverse events after smallpox vaccination in 2006. In addition, several groups have attempted to develop and improve the definition and adjudication of post-vaccination cardiovascular events. We developed the current case definitions for myocarditis and pericarditis as an AEFI building on experience and lessons learnt, as well as a comprehensive literature review. Considerations of other etiologies and causal relationships are outside the scope of this document.     

Neonatal infections: Case definition and guidelines for data collection,analysis, and presentation of immunisation safety data

Maternal vaccination is an important area of research and requires appropriate and internationally comparable definitions and safety standards. The GAIA group, part of the Brighton Collaboration was created with the mandate of proposing standardised definitions applicable to maternal vaccine research. This study proposes international definitions for neonatal infections.The neonatal infections GAIA working group performed a literature review using Medline, EMBASE and the Cochrane collaboration and collected definitions in use in neonatal and public health networks. The common criteria derived from the extensive search formed the basis for a consensus process that resulted in three separate definitions for neonatal blood stream infections (BSI), meningitis and lower respiratory tract infections (LRTI). For each definition three levels of evidence are proposed to ensure the applicability of the definitions to different settings.Recommendations about data collection, analysis and presentation are presented and harmonized with the Brighton Collaboration and GAIA format and other existing international standards for study reporting.