Updated as of August 2014, this practical book will demonstrate proven methods for anonymizing health data to help your organization share meaningful datasets, without exposing patient identity. Leading experts Khaled El Emam and Luk Arbuckle walk you through a risk-based methodology, using case studies from their efforts to de-identify hundreds of datasets. Clinical data is valuable for research and other types of analytics, but making it anonymous without compromising data quality is tricky. This book demonstrates techniques for handling different data types, based on the authors’ experiences with a maternal-child registry, inpatient discharge abstracts, health insurance claims, electronic medical record databases, and the World Trade Center disaster registry, among others. Understand different methods for working with cross-sectional and longitudinal datasets Assess the risk of adversaries who attempt to re-identify patients in anonymized datasets Reduce the size and complexity of massive datasets without losing key information or jeopardizing privacy Use methods to anonymize unstructured free-form text data Minimize the risks inherent in geospatial data, without omitting critical location-based health information Look at ways to anonymize coding information in health data Learn the challenge of anonymously linking related datasets

The Complete Book of Data Anonymization: From Planning to Implementation supplies a 360-degree view of data privacy protection using data anonymization. It examines data anonymization from both a practitioner's and a program sponsor's perspective. Discussing analysis, planning, setup, and governance, it illustrates the entire process of adapting an

Updated as of August 2014, this practical book will demonstrate proven methods for anonymizing health data to help your organization share meaningful datasets, without exposing patient identity. Leading experts Khaled El Emam and Luk Arbuckle walk you through a risk-based methodology, using case studies from their efforts to de-identify hundreds of datasets. Clinical data is valuable for research and other types of analytics, but making it anonymous without compromising data quality is tricky. This book demonstrates techniques for handling different data types, based on the authors’ experiences with a maternal-child registry, inpatient discharge abstracts, health insurance claims, electronic medical record databases, and the World Trade Center disaster registry, among others. Understand different methods for working with cross-sectional and longitudinal datasets Assess the risk of adversaries who attempt to re-identify patients in anonymized datasets Reduce the size and complexity of massive datasets without losing key information or jeopardizing privacy Use methods to anonymize unstructured free-form text data Minimize the risks inherent in geospatial data, without omitting critical location-based health information Look at ways to anonymize coding information in health data Learn the challenge of anonymously linking related datasets

Offering compelling practical and legal reasons why de-identification should be one of the main approaches to protecting patients' privacy, the Guide to the De-Identification of Personal Health Information outlines a proven, risk-based methodology for the de-identification of sensitive health information. It situates and contextualizes this risk-ba

The current social and economic context increasingly demands open data to improve scientific research and decision making. However, when published data refer to individual respondents, disclosure risk limitation techniques must be implemented to anonymize the data and guarantee by design the fundamental right to privacy of the subjects the data refer to. Disclosure risk limitation has a long record in the statistical and computer science research communities, who have developed a variety of privacy-preserving solutions for data releases. This Synthesis Lecture provides a comprehensive overview of the fundamentals of privacy in data releases focusing on the computer science perspective. Specifically, we detail the privacy models, anonymization methods, and utility and risk metrics that have been proposed so far in the literature. Besides, as a more advanced topic, we identify and discuss in detail connections between several privacy models (i.e., how to accumulate the privacy guarantees they offer to achieve more robust protection and when such guarantees are equivalent or complementary); we also explore the links between anonymization methods and privacy models (how anonymization methods can be used to enforce privacy models and thereby offer ex ante privacy guarantees). These latter topics are relevant to researchers and advanced practitioners, who will gain a deeper understanding on the available data anonymization solutions and the privacy guarantees they can offer.

This handbook covers Electronic Medical Record (EMR) systems, which enable the storage, management, and sharing of massive amounts of demographic, diagnosis, medication, and genomic information. It presents privacy-preserving methods for medical data, ranging from laboratory test results to doctors’ comments. The reuse of EMR data can greatly benefit medical science and practice, but must be performed in a privacy-preserving way according to data sharing policies and regulations. Written by world-renowned leaders in this field, each chapter offers a survey of a research direction or a solution to problems in established and emerging research areas. The authors explore scenarios and techniques for facilitating the anonymization of different types of medical data, as well as various data mining tasks. Other chapters present methods for emerging data privacy applications and medical text de-identification, including detailed surveys of deployed systems. A part of the book is devoted to legislative and policy issues, reporting on the US and EU privacy legislation and the cost of privacy breaches in the healthcare domain. This reference is intended for professionals, researchers and advanced-level students interested in safeguarding medical data.

Data sharing can accelerate new discoveries by avoiding duplicative trials, stimulating new ideas for research, and enabling the maximal scientific knowledge and benefits to be gained from the efforts of clinical trial participants and investigators. At the same time, sharing clinical trial data presents risks, burdens, and challenges. These include the need to protect the privacy and honor the consent of clinical trial participants; safeguard the legitimate economic interests of sponsors; and guard against invalid secondary analyses, which could undermine trust in clinical trials or otherwise harm public health. Sharing Clinical Trial Data presents activities and strategies for the responsible sharing of clinical trial data. With the goal of increasing scientific knowledge to lead to better therapies for patients, this book identifies guiding principles and makes recommendations to maximize the benefits and minimize risks. This report offers guidance on the types of clinical trial data available at different points in the process, the points in the process at which each type of data should be shared, methods for sharing data, what groups should have access to data, and future knowledge and infrastructure needs. Responsible sharing of clinical trial data will allow other investigators to replicate published findings and carry out additional analyses, strengthen the evidence base for regulatory and clinical decisions, and increase the scientific knowledge gained from investments by the funders of clinical trials. The recommendations of Sharing Clinical Trial Data will be useful both now and well into the future as improved sharing of data leads to a stronger evidence base for treatment. This book will be of interest to stakeholders across the spectrum of research--from funders, to researchers, to journals, to physicians, and ultimately, to patients.