Multidimensional Epidemiological Transformations: Addressing Location-Privacy in Public Health Practice

The following publications arose directly from this research: AbdelMalik P, Boulos MNK: Multidimensional point transform for public health practice. Methods of Information in Medicine. (In press; ePub ahead of print available online) http://dx.doi.org/10.3414/ME11-01-0001 AbdelMalik P, Boulos MNK, Jones R: The Perceived Impact of Location Privacy: A web-based survey of public health perspectives and requirements in the UK and Canada. BMC Public Health, 8:156 (2008) http://www.biomedcentral.com/1471-2458/8/156 The following papers were co-authored in relation to this research: Khaled El Emam, Ann Brown, Philip AbdelMalik, Angelica Neisa, Mark Walker, Jim Bottomley, Tyson Roffey: A method for managing re-identification risk from small geographic areas in Canada. BMC Medical Informatics and Decision Making. 10:18 (2010) http://www.biomedcentral.com/1472-6947/10/18 Maged N. Kamel Boulos, Andrew J. Curtis, Philip AbdelMalik: Musings on privacy issues in health research involving disaggregate geographic data about individuals. International Journal of Health Geographics. 8:46 (2009) http://www.ij-healthgeographics.com/content/pdf/1476-072X-8-46.pdf Khaled El Emam, Ann Brown, Philip AbdelMalik: Evaluating predictors of geographic area population size cut-offs to manage re-identification risk. Journal of the American Medical Informatics Association, 16:256-266 (2009)The ability to control one’s own personally identifiable information is a worthwhile human right that is becoming increasingly vulnerable. However just as significant, if not more so, is the right to health. With increasing globalisation and threats of natural disasters and acts of terrorism, this right is also becoming increasingly vulnerable. Public health practice – which is charged with the protection, promotion and mitigation of the health of society and its individuals – has been at odds with the right to privacy. This is particularly significant when location privacy is under consideration. Spatial information is an important aspect of public health, yet the increasing availability of spatial imagery and location-sensitive applications and technologies has brought location-privacy to the forefront, threatening to negatively impact the practice of public health by inhibiting or severely limiting data-sharing. This study begins by reviewing the current relevant legislation as it pertains to public health and investigates the public health community’s perceptions on location privacy barriers to the practice. Bureaucracy and legislation are identified by survey participants as the two greatest privacy-related barriers to public health. In response to this clash, a number of solutions and workarounds are proposed in the literature to compensate for location privacy. However, as their weaknesses are outlined, a novel approach - the multidimensional point transform - that works synergistically on multiple dimensions, including location, to anonymise data is developed and demonstrated. Finally, a framework for guiding decisions on data-sharing and identifying requirements is proposed and a sample implementation is demonstrated through a fictitious scenario. For each aspect of the study, a tool prototype and/or design for implementation is proposed and explained, and the need for further development of these is highlighted. In summary, this study provides a multi-disciplinary and multidimensional solution to the clash between privacy and data-sharing in public health practice.Partially sponsored by the Public Health Agency of Canad

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

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

Integration of the Epidemic Intelligence from Open Sources (EIOS) and the INFORM suite: Enhancing early warning with contextual data for informed decision making

The COVID-19 pandemic event has shown how communicable diseases can spread faster and wider than ever before due to globalisation. The early detection of threats plays a crucial role to reduce their impact. It is essential to combine alert systems with contextual information for triggering adequate measures that may prevent or mitigate the risk in a timely manner. This report illustrates how early warning and rapid assessment activities can be supported by the systematic collection and analysis of publicly available information from official sources and the media.JRC.E.1-Disaster Risk Managemen

The perceived impact of location privacy: A web-based survey of public health perspectives and requirements in the UK and Canada

<p>Abstract</p> <p>Background</p> <p>The "place-consciousness" of public health professionals is on the rise as spatial analyses and Geographic Information Systems (GIS) are rapidly becoming key components of their toolbox. However, "place" is most useful at its most precise, granular scale – which increases identification risks, thereby clashing with privacy issues. This paper describes the views and requirements of public health professionals in Canada and the UK on privacy issues and spatial data, as collected through a web-based survey.</p> <p>Methods</p> <p>Perceptions on the impact of privacy were collected through a web-based survey administered between November 2006 and January 2007. The survey targeted government, non-government and academic GIS labs and research groups involved in public health, as well as public health units (Canada), ministries, and observatories (UK). Potential participants were invited to participate through personally addressed, standardised emails.</p> <p>Results</p> <p>Of 112 invitees in Canada and 75 in the UK, 66 and 28 participated in the survey, respectively. The completion proportion for Canada was 91%, and 86% for the UK. No response differences were observed between the two countries. Ninety three percent of participants indicated a requirement for personally identifiable data (PID) in their public health activities, including geographic information. Privacy was identified as an obstacle to public health practice by 71% of respondents. The overall self-rated median score for knowledge of privacy legislation and policies was 7 out of 10. Those who rated their knowledge of privacy as high (at the median or above) also rated it significantly more severe as an obstacle to research (<it>P </it>< 0.001). The most critical cause cited by participants in both countries was bureaucracy.</p> <p>Conclusion</p> <p>The clash between PID requirements – including granular geography – and limitations imposed by privacy and its associated bureaucracy require immediate attention and solutions, particularly given the increasing utilisation of GIS in public health. Solutions include harmonization of privacy legislation with public health requirements, bureaucratic simplification, increased multidisciplinary discourse, education, and development of toolsets, algorithms and guidelines for using and reporting on disaggregate data.</p

Diversity and ethics in trauma and acute care surgery teams: results from an international survey

Background Investigating the context of trauma and acute care surgery, the article aims at understanding the factors that can enhance some ethical aspects, namely the importance of patient consent, the perceptiveness of the ethical role of the trauma leader, and the perceived importance of ethics as an educational subject. Methods The article employs an international questionnaire promoted by the World Society of Emergency Surgery. Results Through the analysis of 402 fully filled questionnaires by surgeons from 72 different countries, the three main ethical topics are investigated through the lens of gender, membership of an academic or non-academic institution, an official trauma team, and a diverse group. In general terms, results highlight greater attention paid by surgeons belonging to academic institutions, official trauma teams, and diverse groups. Conclusions Our results underline that some organizational factors (e.g., the fact that the team belongs to a university context or is more diverse) might lead to the development of a higher sensibility on ethical matters. Embracing cultural diversity forces trauma teams to deal with different mindsets. Organizations should, therefore, consider those elements in defining their organizational procedures. Level of evidence Trauma and acute care teams work under tremendous pressure and complex circumstances, with their members needing to make ethical decisions quickly. The international survey allowed to shed light on how team assembly decisions might represent an opportunity to coordinate team member actions and increase performance

Keeping Public Health Surveillance Practice up to Speed: a Training Strategy to Build Capacity

Surveillance practice is evolving rapidly: globalization of health threats, emergence of infectious diseases, and explosion of easily accessible new technologies. This fluid environment challenges the public health community, but provides it with a fertile environment to innovate and improve its practice. As surveillance is a core function of public health practice, public health practitioners need to be well equipped to achieve this function and address present and future public health challenges. We developed a training course that focused on the practical use of surveillance concepts and principles. We are sharing findings on the development of the course and learner outcomes

A method for managing re-identification risk from small geographic areas in Canada

Abstract Background A common disclosure control practice for health datasets is to identify small geographic areas and either suppress records from these small areas or aggregate them into larger ones. A recent study provided a method for deciding when an area is too small based on the uniqueness criterion. The uniqueness criterion stipulates that an the area is no longer too small when the proportion of unique individuals on the relevant variables (the quasi-identifiers) approaches zero. However, using a uniqueness value of zero is quite a stringent threshold, and is only suitable when the risks from data disclosure are quite high. Other uniqueness thresholds that have been proposed for health data are 5% and 20%. Methods We estimated uniqueness for urban Forward Sortation Areas (FSAs) by using the 2001 long form Canadian census data representing 20% of the population. We then constructed two logistic regression models to predict when the uniqueness is greater than the 5% and 20% thresholds, and validated their predictive accuracy using 10-fold cross-validation. Predictor variables included the population size of the FSA and the maximum number of possible values on the quasi-identifiers (the number of equivalence classes). Results All model parameters were significant and the models had very high prediction accuracy, with specificity above 0.9, and sensitivity at 0.87 and 0.74 for the 5% and 20% threshold models respectively. The application of the models was illustrated with an analysis of the Ontario newborn registry and an emergency department dataset. At the higher thresholds considerably fewer records compared to the 0% threshold would be considered to be in small areas and therefore undergo disclosure control actions. We have also included concrete guidance for data custodians in deciding which one of the three uniqueness thresholds to use (0%, 5%, 20%), depending on the mitigating controls that the data recipients have in place, the potential invasion of privacy if the data is disclosed, and the motives and capacity of the data recipient to re-identify the data. Conclusion The models we developed can be used to manage the re-identification risk from small geographic areas. Being able to choose among three possible thresholds, a data custodian can adjust the definition of "small geographic area" to the nature of the data and recipient.</p