Protecting Patient Privacy: Strategies for Regulating Electronic Health Records Exchange

The report offers policymakers 10 recommendations to protect patient privacy as New York state develops a centralized system for sharing electronic medical records. Those recommendations include:Require that the electronic systems employed by HIEs have the capability to sort and segregate medical information in order to comply with guaranteed privacy protections of New York and federal law. Presently, they do not.Offer patients the right to opt-out of the system altogether. Currently, people's records can be uploaded to the system without their consent.Require that patient consent forms offer clear information-sharing options. The forms should give patients three options: to opt-in and allow providers access to their electronic medical records, to opt-out except in the event of a medical emergency, or to opt-out altogether.Prohibit and sanction the misuse of medical information. New York must protect patients from potential bad actors--that small minority of providers who may abuse information out of fear, prejudice or malice.Prohibit the health information-sharing networks from selling data. The State Legislature should pass legislation prohibiting the networks from selling patients' private health information

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)

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

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

The ethics of uncertainty for data subjects

Modern health data practices come with many practical uncertainties. In this paper, I argue that data subjects’ trust in the institutions and organizations that control their data, and their ability to know their own moral obligations in relation to their data, are undermined by significant uncertainties regarding the what, how, and who of mass data collection and analysis. I conclude by considering how proposals for managing situations of high uncertainty might be applied to this problem. These emphasize increasing organizational flexibility, knowledge, and capacity, and reducing hazard

Safeguarding Against Data Breaches

Reports of data breaches have seen an increase in the past decade and compared to other businesses; these breaches are estimated to be the most expensive in healthcare and affect millions of patients. One may ask what is a data breach, what causes it, and how can it be prevented? Particularly vulnerable to breaches is Protected Health Information (PHI) collected by the healthcare provider. This information is any part of the patient’s medical record or payment history. Regularly, healthcare organizations utilize business associates and covered entities to deliver patient care. During this process, PHI is produced. This study addresses the obligations that business associates and covered entities have toward protecting patient information, the leading cause of breaches: hacking, medical identity theft, and unauthorized access to records, and what measures we will use to protect against such infringements