Role of geographic information systems in birth defects surveillance and research

Siffel, Csaba; Strickland, Matthew; Gardner, Bennett; Kirby, Russell S.; Correa, Adolfo

doi:10.1002/bdra.20325

Cited by 18 publications

(14 citation statements)

References 56 publications

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“…The biomedical and public health literature on geographic information systems (GIS) and spatio-temporal analyses features a large number of research papers mentioning or addressing location privacy, e.g., [11][12][13][14][15][16][17][18][19][20][21][22][23][24][25][26][27][28]. A must-read paper (not specifically health-related) dating back to 1994 [29] shows how chronic privacy issues are in GIS research.…”

Section: Research Literature: Location Privacy Concerns and Solutionsmentioning

confidence: 99%

Musings on privacy issues in health research involving disaggregate geographic data about individuals

Boulos

Curtis

Abdelmalik

2009

International Journal of Health Geographics

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This paper offers a state-of-the-art overview of the intertwined privacy, confidentiality, and security issues that are commonly encountered in health research involving disaggregate geographic data about individuals. Key definitions are provided, along with some examples of actual and potential security and confidentiality breaches and related incidents that captured mainstream media and public interest in recent months and years. The paper then goes on to present a brief survey of the research literature on location privacy/confidentiality concerns and on privacy-preserving solutions in conventional health research and beyond, touching on the emerging privacy issues associated with online consumer geoinformatics and location-based services. The 'missing ring' (in many treatments of the topic) of data security is also discussed. Personal information and privacy legislations in two countries, Canada and the UK, are covered, as well as some examples of recent research projects and events about the subject. Select highlights from a June 2009 URISA (Urban and Regional Information Systems Association) workshop entitled 'Protecting Privacy and Confidentiality of Geographic Data in Health Research' are then presented. The paper concludes by briefly charting the complexity of the domain and the many challenges associated with it, and proposing a novel, 'one stop shop' case-based reasoning framework to streamline the provision of clear and individualised guidance for the design and approval of new research projects (involving geographical identifiers about individuals), including crisp recommendations on which specific privacy-preserving solutions and approaches would be suitable in each case.

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Section: Research Literature: Location Privacy Concerns and Solutionsmentioning

confidence: 99%

Musings on privacy issues in health research involving disaggregate geographic data about individuals

Boulos

Curtis

Abdelmalik

2009

International Journal of Health Geographics

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“…Recent MACDP analyses found that 20% of pregnant women in Atlanta changed residences between the dates of conception and delivery (Siffel et al, 2006). Location misclassification errors also can occur because the geocode corresponding to maternal residence is used as an overall proxy for spatial location.…”

Section: Discussionmentioning

confidence: 99%

“…These data have also been used to evaluate seasonality in birth defects prevalence (Siffel et al, 2005) and to monitor temporal trends in NTDs and other birth defects in relation to folic acid fortification (Honein et al, 2001;Canfield et al, 2005;Williams et al, 2005;Dolk, 1999). Use of birth defects surveillance data for monitoring spatial patterns in the occurrence of birth defects (e.g., spatial clusters and differential ascertainment patterns) has been more limited (Forand et al, 2002;Babcock et al, 2005;Siffel et al, 2006). However, as birth defects surveillance programs become better able to incorporate geocoded records in their databases, a question arises regarding the availability of practical methods to expand monitoring to utilize the spatial dimension of the data.…”

Section: Introductionmentioning

confidence: 98%

Application of the automated spatial surveillance program to birth defects surveillance data

Gardner

Strickland

Correa

2007

Birth Defects Research

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“…Several reported the use of private firms to geocode their data without providing the level of methodological detail presented here. [33][34][35][36] Whether geocoding is done in-house or by a commercial firm, reporting the detailed methods and geocoding results are important for assessing validity as accuracy and error varies using either method. 11,37 The description of the phases, processes, and decisions involved in retrospectively creating a GIS in the JHS provides a basis for future studies to include in study protocols.…”

Section: Discussionmentioning

confidence: 99%

Methods for Retrospective Geocoding in Population Studies: The Jackson Heart Study

et al. 2009

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The increasing use of geographic information systems (GIS) in epidemiological population studies requires careful attention to the methods employed in accomplishing geocoding and creating a GIS. Studies have provided limited details,hampering the ability to assess validity of spatial data. The purpose of this paper is to describe the multiphase geocoding methods used to retrospectively create a GIS in the Jackson Heart Study (JHS). We used baseline data from 5,302 participants enrolled in the JHS between 2000 and 2004 in a multiphase process to accomplish geocoding2 years after participant enrollment. After initial deletion of ungeocodable addresses(n=52), 96% were geocoded using ArcGIS. An interactive method using data abstraction from participant records, use of additional maps and street reference files,and verification of existence of address, yielded successful geocoding of all but 13 addresses. Overall, nearly 99% (n=5,237) of the JHS cohort was geocoded retrospectively using the multiple strategies for improving and locating geocodable addresses. Geocoding validation procedures revealed highly accurate and reliable geographic data. Using the methods and protocol developed provided a reliable spatial database that can be used for further investigation of spatial epidemiology. Baseline results were used to describe participants by select geographic indicators, including residence in urban or rural areas, as well as to validate the effectiveness of the study's sampling plan. Further, our results indicate that retrospectively developing a reliable GIS for a large, epidemiological study is feasible. This paper describes some of the challenges in retrospectively creating a GIS and provides practical tips that enhanced the success.

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Role of geographic information systems in birth defects surveillance and research

Abstract: We recommend a broad and systematic use of GIS in birth defects spatial surveillance and research.

Cited by 18 publications

References 56 publications

Musings on privacy issues in health research involving disaggregate geographic data about individuals

Musings on privacy issues in health research involving disaggregate geographic data about individuals

Application of the automated spatial surveillance program to birth defects surveillance data

Methods for Retrospective Geocoding in Population Studies: The Jackson Heart Study

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