Information technology for longitudinal birth cohorts (original) (raw)
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MEDINFO 2021: One World, One Health – Global Partnership for Digital Innovation
To conduct a multi-center prospective study over more than one year requires an efficient system that can synchronize collection of data from several sources in real-time and facilitate remote data management. This paper describes the design and use of an in-house data collection and sample information management system that was used in a prospective birth cohort study in Thailand. Participants were enrolled from three hospitals and were required to visit their respective hospital and complete self-administered questionnaires (SAQ) at every visit. The in-house informatics system required integration of the data collection streams that can handle three different types of data (SAQ, clinical record, and laboratory sample tracking). The system has been implemented in the pilot phase of a birth cohort study and has demonstrated its usability for further application to an expanded study.
Feasibility of recruiting a birth cohort through the Internet: the experience of the NINFEA cohort
European Journal of Epidemiology, 2007
The NINFEA cohort is an Italian birth cohort aiming at recruiting pregnant women through the Internet and following-up their children. To understand whether Internet-based recruitment was feasible we started a pilot in July 2005 targeted to pregnant women visiting the hospitals of the city of Turin (900,000 inhabitants), where we advertised the study. For this purpose we constructed a website (www.progettoninfea.it), with on-line questionnaires to be completed during pregnancy and at 6 and 18 months after delivery. Participants' characteristics were compared with those of women giving birth in Turin, which are routinely released as individual anonymous records. We also compared complete with partial respondents. We also carried out a survey of 122 women giving birth in the main Turin obstetric hospital to estimate the proportion of pregnant women with access to the Internet and awareness of the NINFEA cohort. By December 2006, we had recruited 670 women. Participation was associated with being older, a university graduate, primiparous and born in Italy. Complete response (n = 633) was associated with being primiparous and participation after the first trimester. In the survey, 66% (95% confidence interval: 56-74%; n = 80) of the women had access to the Internet and 42% (33-51%; n = 51) were aware of the study; 6.5% (2.9-12.5%; n = 8) had participated in the NINFEA cohort. Our study indicates that recruitment of an Internet-based birth cohort is feasible. As with many other types of birth cohort study, the participants are a self-selected sample. To minimise selection bias analyses should therefore be limited to internal comparisons.
[Production of data for the pre-natal information system in basic health units]
Revista da Escola de Enfermagem da U S P, 2013
The objective of this study was to analyze the process of data production for Information System Prenatal and Birth (SISPRENATAL) in Basic Health Units of Cuiabá, MT, Brazil. This qualitative, exploratory and descriptive study was developed in eight units of Basic Health Coordination, through semi-structured interviews with professionals who worked with SISPRENATAL (nurses, physicians, managers and data entry) and comparative document analysis between system data and the written patient records. Data analysis revealed a lack of definition of the team's participation in the production of data and different modes of completing forms within the system. Professionals' knowledge about many aspects of the formswas divergent, completion of the forms was inadequate, and flaws in the computerized system were identified. Measures such as professional training, the review of the system and its forms are indispensible for the production of reliable information about prenatal care in the...
The Demographic Database — History of Technical and Methodological Achievements
Historical Life Course Studies
The Demographic Data Base (DDB) at the Centre for Demographic and Ageing Research (CEDAR) at Umeå University has since the 1970s been building longitudinal population databases and disseminating data for research. The databases were built to serve as national research infrastructures, useful for addressing an indefinite number of research questions within a broad range of scientific fields, and open to all academic researchers who wanted to use the data. A countless number of customized datasets have been prepared and distributed to researchers in Sweden and abroad and to date, the research has resulted in more than a thousand published scientific reports, books, and articles within a broad range of academic fields. This article will focus on the development of techniques and methods used to store and structure the data at DDB from the beginning in 1973 until today. This includes digitization methods, database design and methods for linkage. The different systems developed for imple...
Health Informatics and Health Information Management in Maternal and Child Health Services
Health Information Management Journal, 2004
In November 1997, the South Western Sydney Area Health Service launched the Mother and Infant Network (MINET). The key objective of MINET is to develop an integrated clinical data network which has the capacity to inform and support a continuum of care for the population of all mothers, infants and children. The MINET data network integrates in-patient services, ambulatory services, and community-based services. The focus of this article is the development and implementation of MINET with reference to the crucial role of data linkage and health informatics in health outcomes/health services research.
Historical life course studies, 2023
Historical Life Course Studies is the electronic journal of the European Historical Population Samples Network (EHPS-Net). The journal is the primary publishing outlet for research involved in the conversion of existing European and non-European large historical demographic databases into a common format, the Intermediate Data Structure, and for studies based on these databases. The journal publishes both methodological and substantive research articles. Methodological Articles This section includes methodological articles that describe all forms of data handling involving large historical databases, including extensive descriptions of new or existing databases, syntax, algorithms and extraction programs. Authors are encouraged to share their syntaxes, applications and other forms of software presented in their article, if pertinent, on the EHPS-Net website. Research articles This section includes substantive articles reporting the results of comparative longitudinal studies that are demographic and historical in nature, and that are based on micro-data from large historical databases.
Lecture Notes in Computer Science, 2013
Development and use of specific information systems are nowadays a priority to healthcare organizations. This interdisciplinary paper, between Medicine and Computer Science, comprises an exploratory survey of obstetric and neonatal assistance during the process of birth by focusing on clinical records. It also involves the development of a healthcare indicators dashboard and the implementation of an Obstetric Electronic Health Record. All these efforts aim to improve quality of healthcare assistance. This prototype has been installed within a Brazilian university hospital. Preliminary results included 907 deliveries (from August to December 2012). The Cesarean section rate was 36.4% (65.4% high-risk pregnancy). Among the perinatal indicators, the Apgar Score bellow seven in the 5 th minute was 5.56% and 0.93% whenever considering only fetuses defined as compatible with life. Disclosure and discussion of these data proved to be able to contribute to researches and to management of an obstetric healthcare unit.
A Study Protocol to Follow a Birth Cohort: Fars Birth Cohort
Shiraz E-Medical Journal
Considering that the birth cohort study is the most appropriate model for studying and evaluating the relationship between exposures during the initial evolution and its long-term effects on the development of diseases, this prospective cohort study is designed for this purpose. Through a stratified random sampling, 6921 women, who were in the 20th to 30th week of gestation and lived in Fars province for at least six months prior to the interview, participated in this prospective cohort study. The study started in 2011 and the 4th follow up was finished in 2017. During the enrolment phase and four follow up after birth, the following information was collected in detail: socioeconomic status, knowledge and attitude of mother, husband toward normal vaginal delivery (NVD) and cesarean section (SC), early and late complications of delivery in mothers and babies, breastfeeding, any medical history in mothers and children, physical activity in children, and common psychiatric problems in mothers. So far, several articles have been published on the first results of the study. Mothers and children under the study will have three more follow ups until the children are 12 years old.
Journal of Public Health, 2013
Background Linkage between routinely collected hospital birth and other records offers the potential for epidemiological and public health research by developing population-level birth cohorts with cradle-to-grave follow-up. Data from births in English National Health Service hospitals are collected in the Hospital Episode Statistics (HES) database but are of uncertain quality.
New uses of legacy systems: examples in perinatal care
Proceedings / AMIA ... Annual Symposium. AMIA Symposium, 1999
In this article, new uses of the Perinatal Information System at the Uruguayan Social Security health care facilities are described. The perinatal information system has been in place for over 13 years, with about 40 thousand clinical records on electronic files. A newly created Web interface allows a distributed access to existing perinatal information within the National Social Security Wide Area a Network. Perinatal data is also exported to a management information system, allowing to dynamically answer questions and make managerial decisions, and eventually link these data with other sources. Future steps regarding clinical information systems are outlined.