Personal Privacy and Common Goods: A Framework for Balancing Under the National Health Information Privacy Rule

In this Article, we discuss how these principles for balancing apply in a number of important contexts where individually identifiable health data are shared. In Part I, we analyze the modern view favoring autonomy and privacy. In the last several decades, individual autonomy has been used as a justification for preventing sharing of information irrespective of the good to be achieved. Although respect for privacy can sometimes be important for achieving public purposes (e.g., fostering the physician/patient relationship), it can also impair the achievement of goals that are necessary for any healthy and prosperous society. A framework for balancing that strictly favors privacy can lead to reduced efficiencies in clinical care, research, and public health. We reason that society would be better served, and individuals would be only marginally less protected, if privacy rules permitted exchange of data for important public benefits. In Part II, we explain the national health information privacy regulations: (1) what do they cover?; (2) to whom do they apply?; and (3) how do they safeguard personal privacy? Parts III and IV focus on whether the standards adhere, or fail to adhere, to the privacy principles discussed in Part I. In Part III, we examine two autonomy rules established in the national privacy regulations: informed consent (for uses or disclosures of identifiable health data for health-care related purposes) and written authorization (for uses or disclosures of health data for non-health care related purposes). We observe that the informed consent rule is neither informed nor consensual. The rule is likely to thwart the effective management of health organizations without benefiting the individual. Requiring written authorization, on the other hand, protects individual privacy to prevent disclosures to entities that do not perform health-related functions, such as employers and life insurers. In Part IV, we examine various contexts in which data can be shared for public purposes under the national privacy rule: public health, research, law enforcement, familial notification, and commercial marketing. We apply our framework for balancing in each context and observe the relative strengths and weaknesses of the privacy regulations in achieving a fair balance of private and public interests

Legal Solutions in Health Reform: Privacy and Health Information Technology

Identifies gaps in the federal health privacy standard and proposes options for strengthening the legal framework for privacy protections in order to build public trust in health information technology. Presents arguments for and against each option

Privacy and Health Information Technology

The increased use of health information technology (health IT) is a common element of nearly every health reform proposal because it has the potential to decrease costs, improve health outcomes, coordinate care, and improve public health. However, it raises concerns about security and privacy of medical information. This paper examines some of the “gaps” in privacy protections that arise out of the current federal health privacy standard, the Health Insurance Portability and Accountability (HIPAA) Privacy Rule, the main federal law which governs the use and disclosure of health information. Additionally, it puts forth a range of possible solutions, accompanied by arguments for and against each. The solutions provide some options for strengthening the current legal framework of privacy protections in order to build public trust in health IT and facilitate its use for health reform. The American Recovery and Reinvestment Act (ARRA) enacted in February 2009 includes a number of changes to HIPAA and its regulations, and those changes are clearly noted among the list of solutions (and ARRA is indicated in the Executive Summary and paper where the Act has a relevant provision)

Watching You: Systematic Federal Surveillance of Ordinary Americans

To combat terrorism, Attorney General John Ashcroft has asked Congress to "enhance" the government's ability to conduct domestic surveillance of citizens. The Justice Department's legislative proposals would give federal law enforcement agents new access to personal information contained in business and school records. Before acting on those legislative proposals, lawmakers should pause to consider the extent to which the lives of ordinary Americans already are monitored by the federal government. Over the years, the federal government has instituted a variety of data collection programs that compel the production, retention, and dissemination of personal information about every American citizen. Linked through an individual's Social Security number, these labor, medical, education and financial databases now empower the federal government to obtain a detailed portrait of any person: the checks he writes, the types of causes he supports, and what he says "privately" to his doctor. Despite widespread public concern about preserving privacy, these data collection systems have been enacted in the name of "reducing fraud" and "promoting efficiency" in various government programs. Having exposed most areas of American life to ongoing government scrutiny and recording, Congress is now poised to expand and universalize federal tracking of citizen life. The inevitable consequence of such constant surveillance, however, is metastasizing government control over society. If that happens, our government will have perverted its most fundamental mission and destroyed the privacy and liberty that it was supposed to protect

Semantic-Based Policy Composition for Privacy-Demanding Data Linkage

Record linkage can be used to support current and future health research across populations however such approaches give rise to many challenges related to patient privacy and confidentiality including inference attacks. To address this, we present a semantic-based policy framework where linkage privacy detects attribute associations that can lead to inference disclosure issues. To illustrate the effectiveness of the approach, we present a case study exploring health data combining spatial, ethnicity and language information from several major on-going projects occurring across Australia. Compared with classic access control models, the results show that our proposal outperforms other approaches with regards to effectiveness, reliability and subsequent data utility

The Australian PCEHR System: Ensuring Privacy and Security through an Improved Access Control Mechanism

An Electronic Health Record (EHR) is designed to store diverse data accurately from a range of health care providers and to capture the status of a patient by a range of health care providers across time. Realising the numerous benefits of the system, EHR adoption is growing globally and many countries invest heavily in electronic health systems. In Australia, the Government invested $467 million to build key components of the Personally Controlled Electronic Health Record (PCEHR) system in July 2012. However, in the last three years, the uptake from individuals and health care providers has not been satisfactory. Unauthorised access of the PCEHR was one of the major barriers. We propose an improved access control model for the PCEHR system to resolve the unauthorised access issue. We discuss the unauthorised access issue with real examples and present a potential solution to overcome the issue to make the PCEHR system a success in Australia