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Assessment of the infectious diseases surveillance system of the Republic of Armenia: an example of surveillance in the Republics of the former Soviet Union.

BACKGROUND: Before 1991, the infectious diseases surveillance systems (IDSS) of the former Soviet Union (FSU) were centrally planned in Moscow. The dissolution of the FSU resulted in economic stresses on public health infrastructure. At the request of seven FSU Ministries of Health, we performed assessments of the IDSS designed to guide reform. The assessment of the Armenian infectious diseases surveillance system (AIDSS) is presented here as a prototype. DISCUSSION: We performed qualitative assessments using the Centers for Disease Control and Prevention (CDC) guidelines for evaluating surveillance systems. Until 1996, the AIDSS collected aggregate and case-based data on 64 infectious diseases. It collected information on diseases of low pathogenicity (e.g., pediculosis) and those with no public health intervention (e.g., infectious mononucleosis). The specificity was poor because of the lack of case definitions. Most cases were investigated using a lengthy, non-disease-specific case-report form Armenian public health officials analyzed data descriptively and reported data upward from the local to national level, with little feedback. Information was not shared across vertical programs. Reform should focus on enhancing usefulness, efficiency, and effectiveness by reducing the quantity of data collected and revising reporting procedures and information types; improving the quality, analyses, and use of data at different levels; reducing system operations costs; and improving communications to reporting sources. These recommendations are generalizable to other FSU republics. SUMMARY: The AIDSS was complex and sensitive, yet costly and inefficient. The flexibility, representativeness, and timeliness were good because of a comprehensive health-care system and compulsory reporting. Some data were questionable and some had no utility.

Armenia↗

Verbal autopsy of 48 000 adult deaths attributable to medical causes in Chennai (formerly Madras), India.

BACKGROUND: In the city of Chennai, India, registration of the fact of death is almost complete but the cause of death is often inadequately recorded on the death certificate. A special verbal autopsy (VA) study of 48 000 adult deaths in Chennai during 1995-97 was conducted to arrive at the probable underlying cause of death and to measure cause specific mortality rates for Chennai. METHODS: Trained non-medical graduates with at least 15 years of formal education interviewed the surviving family members or an associate of the deceased to write a report on the complaints, symptoms, signs, duration and treatment details of illness prior to death. Each report was reviewed centrally by two physicians independently. The reliability was assessed by comparing deaths attributed to cancer by VA with records in Vital Statistics Department and Chennai Cancer Registry. RESULTS: The VA reduced the proportion of deaths attributed to unspecified medical causes and unknown causes from 37% to 7% in early adult life and middle age (25-69 yrs) and has yielded fewer unspecified causes (only 10%) than the death certificate. The sensitivity of VA to identify cancer was 94% in the age group 25-69. CONCLUSION: VA is practicable for deaths in early adult life or middle age and is of more limited value in old age. A systematic program of VA of a representative sample of deaths could assign broad causes not only to deaths in childhood (as has previously been established) but also to deaths in early adult life and middle age.

Adult↗

An evaluation of completeness of tuberculosis notification in the United Kingdom.

BACKGROUND: There has been a resurgence of tuberculosis worldwide, mainly in developing countries but also affecting the United Kingdom (UK), and other Western countries. The control of tuberculosis is dependent on early identification of cases and timely notification to public health departments to ensure appropriate treatment of cases and screening of contacts. Tuberculosis is compulsorily notifiable in the UK, and the doctor making or suspecting the diagnosis is legally responsible for notification. There is evidence of under-reporting of tuberculosis. This has implications for the control of tuberculosis as a disproportionate number of people who become infected are the most vulnerable in society, and are less likely to be identified and notified to the public health system. These include the poor, the homeless, refugees and ethnic minorities. METHOD: This study was a critical literature review on completeness of tuberculosis notification within the UK National Health Service (NHS) context. The review also identified data sources associated with reporting completeness and assessed whether studies corrected for undercount using capture-recapture (CR) methodology. Studies were included if they assessed completeness of tuberculosis notification quantitatively. The outcome measure used was notification completeness expressed between 0% and 100% of a defined denominator, or in numbers not notified where the denominator was unknown. RESULTS: Seven studies that met the inclusion and exclusion criteria were identified through electronic and manual search of published and unpublished literature. One study used CR methodology. Analysis of the seven studies showed that undernotification varied from 7% to 27% in studies that had a denominator; and 38%-49% extra cases were identified in studies which examined specific data sources like pathology reports or prescriptions for anti-tuberculosis drugs. Cases notified were more likely to have positive microbiology than cases not notified which were more likely to have positive histopathology or be surgical in-patients. Collation of prescription data of two or more anti-tuberculosis drugs increases case ascertainment of tuberculosis. CONCLUSION: The reporting of tuberculosis is incomplete in the UK, although notification is a statutory requirement. Undernotification leads to an underestimation of the disease burden and hinders implementation of appropriate prevention and control strategies. The notification system needs to be strengthened to include education and training of all sub-specialities involved in diagnosis and treatment of tuberculosis.

Disease Notification↗

Evaluation of reporting timeliness of public health surveillance systems for infectious diseases.

BACKGROUND: Timeliness is a key performance measure of public health surveillance systems. Timeliness can vary by disease, intended use of the data, and public health system level. Studies were reviewed to describe methods used to evaluate timeliness and the reporting timeliness of National Notifiable Diseases Surveillance System (NNDSS) data was evaluated to determine if this system could support timely notification and state response to multistate outbreaks. METHODS: Published papers that quantitatively measured timeliness of infectious disease surveillance systems operating in the U.S. were reviewed. Median reporting timeliness lags were computed for selected nationally notifiable infectious diseases based on a state-assigned week number and various date types. The percentage of cases reported within the estimated incubation periods for each disease was also computed. RESULTS: Few studies have published quantitative measures of reporting timeliness; these studies do not evaluate timeliness in a standard manner. When timeliness of NNDSS data was evaluated, the median national reporting delay, based on date of disease onset, ranged from 12 days for meningococcal disease to 40 days for pertussis. Diseases with the longer incubation periods tended to have a higher percentage of cases reported within its incubation period. For acute hepatitis A virus infection, which had the longest incubation period of the diseases studied, more than 60% of cases were reported within one incubation period for each date type reported. For cryptosporidiosis, Escherichia coli O157:H7 infection, meningococcal disease, salmonellosis, and shigellosis, less than 40% of cases were reported within one incubation period for each reported date type. CONCLUSION: Published evaluations of infectious disease surveillance reporting timeliness are few in number and are not comparable. A more standardized approach for evaluating and describing surveillance system timeliness should be considered; a recommended methodology is presented. Our analysis of NNDSS reporting timeliness indicated that among the conditions evaluated (except for acute hepatitis A infection), the long reporting lag and the variability across states limits the usefulness of NNDSS data and aberration detection analysis of those data for identification of and timely response to multistate outbreaks. Further evaluation of the factors that contribute to NNDSS reporting timeliness is warranted.

Communicable Diseases↗

Geographic correlation between deprivation and risk of meningococcal disease: an ecological study.

BACKGROUND: Meningitis caused by Neisseria meningitidis is a serious infection which is most common in young children and adolescents. This study investigated the relationships between the incidence and age distribution of meningococcal disease, and socioeconomic environment. METHODS: An ecological design was used, including mapping using a Geographical Information System (GIS) at census ward level. RESULTS: Incidence of meningococcal disease was highest in the most deprived wards, with a relative risk of 1.97 (1.55 - 2.51). Mapping revealed geographical coincidence of deprivation and meningococcal disease, particularly in urban areas. Two-thirds of the increased incidence was due to cases in the under fives. CONCLUSIONS: The results suggest that area deprivation is a risk factor for meningococcal disease, and that its effects are seen most in young children.

Adolescent↗

The National Women's Health Study: assembly and description of a population-based reproductive cohort.

BACKGROUND: Miscarriage is a common event but is remarkably difficult to measure in epidemiological studies. Few large-scale population-based studies have been conducted in the UK. METHODS: This was a population-based two-stage postal survey of reproductive histories of adult women living in the United Kingdom in 2001, sampled from the electronic electoral roll. In Stage 1 a short "screening" questionnaire was sent to over 60,000 randomly selected women in order to identify those aged 55 and under who had ever been pregnant or ever attempted to achieve a pregnancy, from whom a brief reproductive history was requested. Stage 2 involved a more lengthy questionnaire requesting detailed information on every pregnancy (and fertility problems), and questions relating to socio-demographic, behavioural and other factors for the most recent pregnancy in order to examine risk factors for miscarriage. Data on stillbirth, multiple birth and maternal age are compared to national data in order to assess response bias. RESULTS: The response rate was 49% for Stage 1 and 73% for the more targeted Stage 2. A total of 26,050 questionnaires were returned in Stage 1. Of the 17,748 women who were eligible on the grounds of age, 27% reported that they had never been pregnant and had never attempted to conceive a child. The remaining 13,035 women reported a total of 30,661 pregnancies. Comparison of key reproductive indicators (stillbirth and multiple birth rates and maternal age at first birth) with national statistics showed that the data look remarkably similar to the general population. CONCLUSIONS: This study has enabled the assembly of a large population-based dataset of women's reproductive histories which appears unbiased compared to the general UK population and which will enable investigation of hard-to-measure outcomes such as miscarriage and infertility.

Abortion, Spontaneous↗

Validation of the diagnosis of autism in general practitioner records.

BACKGROUND: We report on the validity of the computerized diagnoses of autism in a large case-control study investigating the possible association between autism and the measles, mumps and rubella vaccine in the UK using the General Practitioner Research Database (GPRD). We examined anonymized copies of all relevant available clinical reports, including general practitioners' (GP) notes, consultant, speech therapy and educational psychologists reports, on 318 subjects born between 1973 and 1997 with a diagnosis of autism or a related disorder recorded in their electronic general practice record. METHODS: Data were abstracted to a case validation form allowing for the identification of developmental symptoms relevant to the diagnosis of pervasive developmental disorders (PDDs). Information on other background clinical and familial features was also abstracted. A subset of 50 notes was coded independently by 2 raters to derive reliability estimates for key clinical characteristics. RESULTS: For 294 subjects (92.5%) the diagnosis of PDD was confirmed after review of the records. Of these, 180 subjects (61.2%) fulfilled criteria for autistic disorder. The mean age at first recording of a PDD diagnosis in the GPRD database was 6.3 years (SD = 4.6). Consistent with previous estimates, the proportion of subjects experiencing regression in the course of their development was 19%. Inter-rater reliability for the presence of a PDD diagnosis was good (kappa =.73), and agreement on clinical features such as regression, age of parental recognition of first symptoms, language delay and presence of epilepsy was also good (kappas ranging from.56 to 1.0). CONCLUSIONS: This study provides evidence that the positive predictive value of a diagnosis of autism recorded in the GPRD is high.

Age of Onset↗

Assessing immunization data quality from routine reports in Mozambique.

BACKGROUND: Worldwide immunization coverage shows an increase in the past years but the validity of the official reports for measuring change over time has been questioned. Facing this problem, donor supported initiatives like the Global Alliance for Vaccine and Immunizations, have been putting a lot of effort into assessing the quality of data used, since accurate immunization information is essential for the Expanded Program on Immunization managers to track and improve program performance. The present article, discusses the practices on record keeping, reporting and the support mechanism to ensure data quality in Mozambique. METHODS: A process evaluation study was carried out in Mozambique in one district (Cuamba) in Niassa Province, between January and March 2003. The study was based on semi-structured interviews, participant observation and review of the data collection materials. RESULTS: Differences were found for all vaccine types when comparing facility reports with the tally sheets. The same applies when comparing facility reports with district reports. The study also showed that a routine practice during supervision visits was data quality assessment for the outpatient services but none related to data consistency between the tally sheets and the facility report. For the Expanded Program on Immunization, supervisors concentrated more on the consistency checks between data in the facility reports and the number of vaccines received during the same period. Meetings were based on criticism, for example, why health workers did not reach the target. Nothing in terms of data quality was addressed nor validation rules. CONCLUSION: In this paper we have argued that the quality of data, and consequently of the information system, must be seen in a broader perspective not focusing only on technicalities (data collection tools and the reporting system) but also on support mechanisms. Implications of a poor data quality system will be reflected in the efficiency of health services facing increased demands, with stagnant or decreasing resources.

Child↗

An automated, broad-based, near real-time public health surveillance system using presentations to hospital Emergency Departments in New South Wales, Australia.

BACKGROUND: In a climate of concern over bioterrorism threats and emergent diseases, public health authorities are trialling more timely surveillance systems. The 2003 Rugby World Cup (RWC) provided an opportunity to test the viability of a near real-time syndromic surveillance system in metropolitan Sydney, Australia. We describe the development and early results of this largely automated system that used data routinely collected in Emergency Departments (EDs). METHODS: Twelve of 49 EDs in the Sydney metropolitan area automatically transmitted surveillance data from their existing information systems to a central database in near real-time. Information captured for each ED visit included patient demographic details, presenting problem and nursing assessment entered as free-text at triage time, physician-assigned provisional diagnosis codes, and status at departure from the ED. Both diagnoses from the EDs and triage text were used to assign syndrome categories. The text information was automatically classified into one or more of 26 syndrome categories using automated "naïve Bayes" text categorisation techniques. Automated processes were used to analyse both diagnosis and free text-based syndrome data and to produce web-based statistical summaries for daily review. An adjusted cumulative sum (cusum) was used to assess the statistical significance of trends. RESULTS: During the RWC the system did not identify any major public health threats associated with the tournament, mass gatherings or the influx of visitors. This was consistent with evidence from other sources, although two known outbreaks were already in progress before the tournament. Limited baseline in early monitoring prevented the system from automatically identifying these ongoing outbreaks. Data capture was invisible to clinical staff in EDs and did not add to their workload. CONCLUSION: We have demonstrated the feasibility and potential utility of syndromic surveillance using routinely collected data from ED information systems. Key features of our system are its nil impact on clinical staff, and its use of statistical methods to assign syndrome categories based on clinical free text information. The system is ongoing, and has expanded to cover 30 EDs. Results of formal evaluations of both the technical efficiency and the public health impacts of the system will be described subsequently.

Anniversaries and Special Events↗

Reliability of case definitions for public health surveillance assessed by Round-Robin test methodology.

BACKGROUND: Case definitions have been recognized to be important elements of public health surveillance systems. They are to assure comparability and consistency of surveillance data and have crucial impact on the sensitivity and the positive predictive value of a surveillance system. The reliability of case definitions has rarely been investigated systematically. METHODS: We conducted a Round-Robin test by asking all 425 local health departments (LHD) and the 16 state health departments (SHD) in Germany to classify a selection of 68 case examples using case definitions. By multivariate analysis we investigated factors linked to classification agreement with a gold standard, which was defined by an expert panel. RESULTS: A total of 7870 classifications were done by 396 LHD (93%) and all SHD. Reporting sensitivity was 90.0%, positive predictive value 76.6%. Polio case examples had the lowest reporting precision, salmonellosis case examples the highest (OR = 0.008; CI: 0.005-0.013). Case definitions with a check-list format of clinical criteria resulted in higher reporting precision than case definitions with a narrative description (OR = 3.08; CI: 2.47-3.83). Reporting precision was higher among SHD compared to LHD (OR = 1.52; CI: 1.14-2.02). CONCLUSION: Our findings led to a systematic revision of the German case definitions and build the basis for general recommendations for the creation of case definitions. These include, among others, that testable yes/no criteria in a check-list format is likely to improve reliability, and that software used for data transmission should be designed in strict accordance with the case definitions. The findings of this study are largely applicable to case definitions in many other countries or international networks as they share the same structural and editorial characteristics of the case definitions evaluated in this study before their revision.

Attitude of Health Personnel↗

Health system barriers to strengthening vaccine-preventable disease surveillance and response in the context of decentralization: evidence from Georgia.

BACKGROUND: A critical challenge in the health sector in developing countries is to ensure the quality and effectiveness of surveillance and public health response in an environment of decentralization. In Georgia, a country where there has been extensive decentralization of public health responsibilities over the last decade, an intervention was recently piloted to strengthen district-level local vaccine-preventable disease surveillance and response activities through improved capacity to analyze and use routinely collected data. The purpose of the study is 1) to assess the effectiveness of the intervention on motivation and perceived capacity to analyze and use information at the district-level, and 2) to assess the role that individual- and system-level factors play in influencing the effectiveness of the intervention. METHODS: A pre-post quasi-experimental research design is used for the quantitative evaluation. Data come from a baseline and two follow-up surveys of district-level health staff in 12 intervention and 3 control Center of Public Health (CPH) offices. These data were supplemented by record reviews in CPH offices as well as focus group discussions among CPH and health facility staff. RESULTS: The results of the study suggest that a number of expected improvements in perceived data availability and analysis occurred following the implementation of the intervention package, and that these improvements in analysis could be attributable to the intervention package. However, the study results also suggest that there exist several health systems barriers that constrained the effectiveness of the intervention in influencing the availability of data, analysis and response. CONCLUSION: To strengthen surveillance and response systems in Georgia, as well as in other countries, donor, governments, and other stakeholders should consider how health systems factors influence investments to improve the availability of data, analysis, and response. Linking the intervention to broader health sector reforms in management processes and organizational culture will be critical to ensure that efforts designed to promote evidence-based decision-making are successful, especially as they are scaled up to the national level.

Focus Groups↗

Defining a common set of indicators to monitor road accidents in the European Union.

BACKGROUND: currently road accidents are mostly monitored through mortality and injury rates. This paper reports the methodology and the results of a project set forth by the European Union (EU) and coordinated by the WHO aimed at identifying and evaluating a core set of indicators to monitor the causal chain of road accident health effects. The project is part of the ECOEHIS (Development of Environment and Health Indicators for European Union Countries). METHODS: a group of experts (WG), identified 14 indicators after a review of the information collected at the EU level, each of them representing a specific aspect of the DPSEEA (Driving, Pressure, State, Exposure, Effect, Action) model applied and adapted to the road accidents. Each indicator was scored according to a list of 16 criteria chosen by the WG. Those found to have a high score were analysed to determine if they were compatible with EU legislation and then tested in the feasibility study. RESULTS: 11 of the 14 indicators found to be relevant and compatible with the criteria of selection were proposed for the feasibility study. Mortality, injury, road accident rate, age of vehicle fleet, and distance travelled are the indicators recommended for immediate implementation. CONCLUSION: after overcoming the limitations that emerged (absence of a common definition of death by road accident and injury severity, underestimation of injuries, differences in information quality) this core set of indicators will allow Member States to carry out effective internal/external comparisons over time.

Acceleration↗

Distributed data processing for public health surveillance.

BACKGROUND: Many systems for routine public health surveillance rely on centralized collection of potentially identifiable, individual, identifiable personal health information (PHI) records. Although individual, identifiable patient records are essential for conditions for which there is mandated reporting, such as tuberculosis or sexually transmitted diseases, they are not routinely required for effective syndromic surveillance. Public concern about the routine collection of large quantities of PHI to support non-traditional public health functions may make alternative surveillance methods that do not rely on centralized identifiable PHI databases increasingly desirable. METHODS: The National Bioterrorism Syndromic Surveillance Demonstration Program (NDP) is an example of one alternative model. All PHI in this system is initially processed within the secured infrastructure of the health care provider that collects and holds the data, using uniform software distributed and supported by the NDP. Only highly aggregated count data is transferred to the datacenter for statistical processing and display. RESULTS: Detailed, patient level information is readily available to the health care provider to elucidate signals observed in the aggregated data, or for ad hoc queries. We briefly describe the benefits and disadvantages associated with this distributed processing model for routine automated syndromic surveillance. CONCLUSION: For well-defined surveillance requirements, the model can be successfully deployed with very low risk of inadvertent disclosure of PHI--a feature that may make participation in surveillance systems more feasible for organizations and more appealing to the individuals whose PHI they hold. It is possible to design and implement distributed systems to support non-routine public health needs if required.

Bioterrorism↗

Support for immunization registries among parents of vaccinated and unvaccinated school-aged children: a case control study.

BACKGROUND: Immunizations have reduced childhood vaccine preventable disease incidence by 98-100%. Continued vaccine preventable disease control depends on high immunization coverage. Immunization registries help ensure high coverage by recording childhood immunizations administered, generating reminders when immunizations are due, calculating immunization coverage and identifying pockets needing immunization services, and improving vaccine safety by reducing over-immunization and providing data for post-licensure vaccine safety studies. Despite substantial resources directed towards registry development in the U.S., only 48% of children were enrolled in a registry in 2004. Parental attitudes likely impact child participation. Consequently, the purpose of this study was to assess the attitudes of parents of vaccinated and unvaccinated school-aged children regarding: support for immunization registries; laws authorizing registries and mandating provider reporting; opt-in versus opt-out registry participation; and financial worth and responsibility of registry development and implementation. METHODS: A case control study of parents of 815 children exempt from school vaccination requirements and 1630 fully vaccinated children was conducted. Children were recruited from 112 elementary schools in Colorado, Massachusetts, Missouri, and Washington. Surveys administered to the parents, asked about views on registries and perceived utility and safety of vaccines. Parental views were summarized and logistic regression models compared differences between parents of exempt and vaccinated children. RESULTS: Surveys were completed by 56.1% of respondents. Fewer than 10% of parents were aware of immunization registries in their communities. Among parents aware of registries, exempt children were more likely to be enrolled (65.0%) than vaccinated children (26.5%) (p value = 0.01). A substantial proportion of parents of exempt children support immunization registries, particularly if registries offer choice for participation. Few parents of vaccinated (6.8%) and exempt children (6.7%) were aware of laws authorizing immunization registries. Support for laws authorizing registries and requiring health care providers to report to registries was more common among parents of vaccinated than exempt children. Most parents believed that the government, vaccine companies or insurance companies should pay for registries. CONCLUSION: Parental support for registries was relatively high. Parental support for immunization registries may increase with greater parental awareness of the risks of vaccine preventable diseases and utility of vaccination.

Adult↗

Approaches to the evaluation of outbreak detection methods.

BACKGROUND: An increasing number of methods are being developed for the early detection of infectious disease outbreaks which could be naturally occurring or as a result of bioterrorism; however, no standardised framework for examining the usefulness of various outbreak detection methods exists. To promote comparability between studies, it is essential that standardised methods are developed for the evaluation of outbreak detection methods. METHODS: This analysis aims to review approaches used to evaluate outbreak detection methods and provide a conceptual framework upon which recommendations for standardised evaluation methods can be based. We reviewed the recently published literature for reports which evaluated methods for the detection of infectious disease outbreaks in public health surveillance data. Evaluation methods identified in the recent literature were categorised according to the presence of common features to provide a conceptual basis within which to understand current approaches to evaluation. RESULTS: There was considerable variation in the approaches used for the evaluation of methods for the detection of outbreaks in public health surveillance data, and appeared to be no single approach of choice. Four main approaches were used to evaluate performance, and these were labelled the Descriptive, Derived, Epidemiological and Simulation approaches. Based on the approaches identified, we propose a basic framework for evaluation and recommend the use of multiple approaches to evaluation to enable a comprehensive and contextualised description of outbreak detection performance. CONCLUSION: The varied nature of performance evaluation demonstrated in this review supports the need for further development of evaluation methods to improve comparability between studies. Our findings indicate that no single approach can fulfil all evaluation requirements. We propose that the cornerstone approaches to evaluation identified provide key contributions to support internal and external validity and comparability of study findings, and suggest these be incorporated into future recommendations for performance assessment.

Benchmarking↗

Organizational aspects and implementation of data systems in large-scale epidemiological studies in less developed countries.

BACKGROUND: In the conduct of epidemiological studies in less developed countries, while great emphasis is placed on study design, data collection, and analysis, often little attention is paid to data management. As a consequence, investigators working in these countries frequently face challenges in cleaning, analyzing and interpreting data. In most research settings, the data management team is formed with temporary and unskilled persons. A proper working environment and training or guidance in constructing a reliable database is rarely available. There is little information available that describes data management problems and solutions to those problems. Usually a line or two can be obtained in the methods section of research papers stating that the data are doubly-entered and that outliers and inconsistencies were removed from the data. Such information provides little assurance that the data are reliable. There are several issues in data management that if not properly practiced may create an unreliable database, and outcomes of this database will be spurious. RESULTS: We have outlined the data management practices for epidemiological studies that we have modeled for our research sites in seven Asian countries and one African country. CONCLUSION: Information from this model data management structure may help others construct reliable databases for large-scale epidemiological studies in less developed countries.

Computer Security↗

Identifying strategies to improve access to credible and relevant information for public health professionals: a qualitative study.

BACKGROUND: Movement towards evidence-based practices in many fields suggests that public health (PH) challenges may be better addressed if credible information about health risks and effective PH practices is readily available. However, research has shown that many PH information needs are unmet. In addition to reviewing relevant literature, this study performed a comprehensive review of existing information resources and collected data from two representative PH groups, focusing on identifying current practices, expressed information needs, and ideal systems for information access. METHODS: Nineteen individual interviews were conducted among employees of two domains in a state health department--communicable disease control and community health promotion. Subsequent focus groups gathered additional data on preferences for methods of information access and delivery as well as information format and content. Qualitative methods were used to identify themes in the interview and focus group transcripts. RESULTS: Informants expressed similar needs for improved information access including single portal access with a good search engine; automatic notification regarding newly available information; access to best practice information in many areas of interest that extend beyond biomedical subject matter; improved access to grey literature as well as to more systematic reviews, summaries, and full-text articles; better methods for indexing, filtering, and searching for information; and effective ways to archive information accessed. Informants expressed a preference for improving systems with which they were already familiar such as PubMed and listservs rather than introducing new systems of information organization and delivery. A hypothetical ideal model for information organization and delivery was developed based on informants' stated information needs and preferred means of delivery. Features of the model were endorsed by the subjects who reviewed it. CONCLUSION: Many critical information needs of PH practitioners are not being met efficiently or at all. We propose a dual strategy of: 1) promoting incremental improvements in existing information delivery systems based on the expressed preferences of the PH users of the systems and 2) the concurrent development and rigorous evaluation of new models of information organization and delivery that draw on successful resources already operating to deliver information to clinical medical practitioners.

Access to Information↗

PHSkb: a knowledgebase to support notifiable disease surveillance.

BACKGROUND: Notifiable disease surveillance in the United States is predominantly a passive process that is often limited by poor timeliness and low sensitivity. Interoperable tools are needed that interact more seamlessly with existing clinical and laboratory data to improve notifiable disease surveillance. DESCRIPTION: The Public Health Surveillance Knowledgebase (PHSkb) is a computer database designed to provide quick, easy access to domain knowledge regarding notifiable diseases and conditions in the United States. The database was developed using Protégé ontology and knowledgebase editing software. Data regarding the notifiable disease domain were collected via a comprehensive review of state health department websites and integrated with other information used to support the National Notifiable Diseases Surveillance System (NNDSS). Domain concepts were harmonized, wherever possible, to existing vocabulary standards. The knowledgebase can be used: 1) as the basis for a controlled vocabulary of reportable conditions needed for data aggregation in public health surveillance systems; 2) to provide queriable domain knowledge for public health surveillance partners; 3) to facilitate more automated case detection and surveillance decision support as a reusable component in an architecture for intelligent clinical, laboratory, and public health surveillance information systems. CONCLUSIONS: The PHSkb provides an extensible, interoperable system architecture component to support notifiable disease surveillance. Further development and testing of this resource is needed.

Communicable Diseases↗