Amy J. Blatt

Ethics and Privacy Issues in the Use of GIS

The proliferation of mapping technologies has sparked much attention and debate on the ethical conduct in the use of geographic information systems (GIS) (Onsrud 1995; Crampton 1995; Stewart, Cho, and Clark, 1997; Crampton 2003; Armstrong and Ruggles, 2005). As more map and geography libraries are maintaining geospatial datasets for the university research community, ethical standards of conduct in the use and handling of data become an increasingly important component of data archiving, cataloguing, and distribution. In a recent guest editorial in this journal’s theme volume on “Geographic Opportunities in Medicine,” I discussed how academic map and geography libraries can act as “enablers” to distribute geographic databases and resources to a wider, nontraditional, and nonacademic audience of health care delivery and service providers (Blatt, 2011). In areas of geography where personal data on individuals are often used (such as medical geography, geodemography, and planning), it is important for map and geography librarians to be aware of ethics and privacy issues in the archiving, cataloguing, and distribution of geospatial datasets containing personal and identifiable information. Among the many ethical issues that surround the use of geospatial technologies are standards of ethical practice, data accuracy and validation, information liability, copyright, quality assurance and duty of care, licensing, disclaimers, metadata, and intent of use. These issues are becoming increasingly important as, for example, the data used in a class project may be published and referenced in a peer-reviewed scholarly journal or a mass/social media outlet. Users of geospatial data need to be able to verify the accuracy of the datasets used (which is often indicated in the accompanying metadata document). Until recently, this has not been a major problem, because

Data Privacy and Ethical Uses of Volunteered Geographic Information

There is great potential for volunteered geographic information (VGI) to augment data used for public health disease surveillance, in areas such as mass gatherings and qualitative GIS. The goal of this chapter is to explore these important issues of patient privacy, ethics, and liability, as they pertain to the use of VGI to augment health information exchanges (HIEs) in providing data for public health research programs. The current attention on health reform and HIEs provide professional geographers with an excellent opportunity to explore the contributions of VGI to this field. The chapter begins by briefly describing the legislation of patient privacy and protection in the United States, such as the Health Insurance Portability and Accountability Act of 1996 (HIPAA) and the American Recovery and Reinvestment Act of 2009. It also discuss the appropriate and inappropriate disclosures of protected health information (PHI). Next, it examines the ethical and legal issues surrounding the use of VGI in disease surveillance. Finally, the chapter will demonstrate that VGI yields tremendous value in providing sensitive and timely surveillance data when reliable and consistent communications between health care providers and regional health authorities are not possible.

The Benefits and Risks of Volunteered Geographic Information

Volunteered geographic information (VGI) is a term coined by Michael Goodchild in 2007 when he referred to the popular practice of observing, collecting, and producing geographic information by tho...

Technological Changes in Maps and Cartography

Maps are a convenient way for people—whether they are geographers, cartographers, librarians, or others—to express their spatial knowledge of the environment. Before the technological advances of g...

Geospatial Applications in Disease Surveillance: Solutions for the Future

Given the current attention on national health care reform and the electronic exchange of health information, this article highlights the major developments in disease surveillance and identifies a number of public health opportunities for geospatial thought leaders to undertake. Issues surrounding spatial data quality and resolution, the legal and ethical issues of volunteered geographical health information, and the technical demands of formulating a synthetic and integrative disease surveillance system represent the types of research questions that only geographers can address successfully.

Open-Access Geospatial Data: Promise and Potential

In June 2009, the United States became the first country in the world to make all of its government data “open by default,” except for personal information and information related to national security. To date, nearly 190,000 datasets have been posted on the Data.gov website (Figure 1). Over 50 other nations around the world—such as Tunisia and Ukraine—have followed the example of Data.gov and made a wide variety of their government data openly accessible to its citizens and businesses (U.S. General Services Administration 2015). The list of open-access datasets goes on and on. Take, for instance, the Earth Resources Observation and Science (EROS) Center. It holds the world’s largest civilian archive of images of the Earth’s surface (Figure 2). The archive spans from 1937 to present-day satellite images of the Earth (U.S. Geological Survey 2015). Or, the Geospatial Data Gateway, a “one-stop” source for all environmental and natural resources data—a service made available through a partnership of three U.S. Department of Agriculture agencies: the Natural Resources Conservation Service, the Farm Service Agency, and Rural Development (U.S. Department of Agriculture 2015). Or, the National Historical Geographic Information System, which provides open access to summary statistics and geographic information system (GIS) boundary files for the U.S. censuses and other nationwide surveys from 1790 to the present day (Minnesota Population Center 2011). All of this is very commendable. However, given the huge volume of data that is currently available, it is reasonable to ask why more scientific and social progress has not been made with this information. Certainly there is not a lack of open-access tools to handle the data. In the public domain, the “R” statistical package is often used to handle numerical and statistical analyses, and open-source mapping programs like MapWindow GIS (available at http://www.mapwindow.org/; Figure 3) and GRASS 7

A New Model

This final chapter summarizes the purposes and goals of the Patient Protection and Affordable Care Act (PPACA), and describes how it is organized to expand health care coverage and encourage disease prevention. Having a patient’s medical information (such as notes from health care visits, laboratory and radiology test results, prescribed medications, and health insurance) stored in an electronic health record (EHR), and sharing that information with different clinicians involved in a patient’s care, is the promise of health information exchanges (HIEs). Drawing upon knowledge from different disciplines, a new model of medical geography is described, one that re-contextualizes the discipline against a history of national health care reform, and advocates for a more engaged model of patient health care that utilizes geospatial health intelligence in the examining room.

Geospatial Data Mining and Knowledge Discovery

This chapter surveys three emerging issues concerning geospatial data mining: the need to extend patient privacy protections beyond HIPAA, the use of geospatial visualization and data mining algorithms in medical geographic research, and the growth of geospatial data mining applications in public health. Geospatial data mining is the process of discovering interesting patterns in large and disparate geographic datasets so that the information is meaningful and useful to decision-makers. It involves geo-statistical algorithms, which are used for prediction, classification, and for finding interesting patterns in the data, such as associations, clusters and subgroups. A major challenge in the discipline of public health is harvesting knowledge discovery from the growing volume of data, because the discipline is a knowledge-intensive domain. Most health care applications are data-intensive and involve sophisticated data mining techniques. Since health is a geographical phenomenon, geospatial technologies play an important role in strengthening the process of epidemiological surveillance, information management and analysis.

Geographical Representations of Patients and Their Health Conditions

This chapter briefly reviews the well-established paradigms in patient representations of health. Over the last 50 years, the view of the patient has evolved from a person affected by an infectious disease to a person who is constantly changing and adapting to changes in a social and natural environment of hosts, agents, and reservoirs. Extensive research has demonstrated that the quality of neighborhoods (i.e., their environmental and social contexts) matters to human health. The chapter moves on to examine how viewing a patient through the lens of a landscape, as an organizing principle, can improve patient care and delivery. For instance, when a patient’s medical history is combined with his or her place history in an electronic medical record (EMR), what additional insights can a physician gain to improve the quality and timeliness of a clinical diagnosis? Finally, the chapter concludes with a discussion of how combining qualitative and quantitative GIS methodologies can uncover the health conditions of minority populations more readily, such that life-saving treatments can commence before problematic symptoms appear.

The Importance of Geography in Disease Surveillance

The current attention on health care reform in the United States provides an excellent opportunity for professional medical geographers to be engaged in research on population and community health. As the history of disease surveillance in the United States indicates, there is a need for more synthetic and integrative research on disease surveillance systems that can improve health outcomes and quality of care. Such a system would incorporate the principles of an accessible and distributed surveillance infrastructure and multiple streams of data based on shared references to the common geographic locations. Medical geographers are well poised to address the technical demands of these issues, through their knowledge of issues such as spatial data quality and resolution, the legal and ethical complexities of volunteered geographic health information, and the proliferation of web technologies (like Web 2.0 and 3.0). The research methods needed to address these topics span a number of paradigms, from the technical dimensions of GIScience to the social critiques of contemporary human geography – and have the power to engage a broad cross-section of professional geographers.