Patient’s Guide to HIPAA

The World Privacy Forum is a leading organization in health privacy. Our Patients’ Guide to HIPAA is the only patient-centered resource that explains in simple language how to use the law to protect your privacy.

The Patient’s Guide is now available as an ebook, as a PDF file, and online.

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See the blog roll below for news by date

Feb 01 2023

FTC takes first enforcement action under its Health Breach Notification Rule; also takes action against misrepresentation of HIPAA compliance

The FTC announced its first enforcement action under its Health Breach Notification Rule. This rule applies to entities that are not covered under HIPAA. The announcement of the proposed order was filed by the U.S. Department of Justice on behalf of the FTC against the “…telehealth and prescription drug discount provider GoodRx Holdings, Inc. for

Dec 19 2019

WPF urges National Institutes of Health to expand privacy guidance for researchers

WPF is urging the National Institutes of Health to do more to properly advise the research community and to protect data subjects in its draft guidance on data management and sharing. WPF is asking for changes to the NIH guidance because in the US, much health research data in the hands of researchers is not subject to the privacy or security rules in HIPAA.

Mar 05 2019

Patient’s Guide to HIPAA: How to Use the Law to Guard your Health Privacy

Download PDF Download ePub Donate Credits → Version 2.0 Prepared by Robert Gellman for the World Privacy Forum, with assistance from Pam Dixon, executive director, World Privacy Forum. John Fanning, former privacy advocate, U.S. Department of Health and Human Services, and Dr. Lewis Lorton, health technology and privacy expert contributed to the first edition

Mar 31 2009

Blog Post: Patient’s Guide to HIPAA

New Health Privacy Resource — The Patient’s Guide to HIPAA is the first comprehensive guide to medical privacy written expressly for patients with a practical eye as to how to use the law to protect privacy. It is a major privacy resource for patients, written directly and without legalese. The Patient’s Guide to HIPAA is

National IDs Around the World — Interactive map

About this Data Visualization: This interactive map displays the presence...
Report: From the Filing Cabinet to the Cloud: Updating the Privacy Act of 1974

This comprehensive report and proposed bill text is focused on the Privacy Act of 1974, an important and early Federal privacy law that applies to the government sector and some contractors. The Privacy Act was written for the 1970s information era -- an era that was characterized by the use of mainframe computers and filing cabinets. Today's digital information era looks much different than the '70s: smart phones are smarter than the old mainframes, and documents are now routinely digitized and stored and perhaps even analyzed in the cloud, among many other changes. The report focuses on why the Privacy Act needs an update that will bring it into this century, and how that could look and work. This work was written by Robert Gellman, and informed by a two-year multi-stakeholder process.
COVID-19 and HIPAA: HHS’s Troubled Approach to Waiving Privacy and Security Rules for the Pandemic

The COVID-19 pandemic strained the U.S. health ecosystem in numerous ways, including putting pressure on the HIPAA privacy and security rules. The Department of Health and Human Services adjusted the privacy and security rules for the pandemic through the use of statutory and administrative HIPAA waivers. While some of the adjustments are appropriate for the emergency circumstances, there are also some meaningful and potentially unwelcome privacy and security consequences. At an appropriate time, the use of HIPAA waivers as a response to health care emergencies needs a thorough review. This report sets out the facts, identifies the issues, and proposes a roadmap for change.