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.

Visit A Patient’s Guide to HIPAA

See the blog roll below for news by date

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National Institutes of Health to do more to properly advise the research community and to protect data subjects in its draft guidance on data management and sharing.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

WPF a panelist at FTC Data Portability Workshop
22 September 2020, Washington, DC via zoom
WPF presenting on COVID-19 and identity at OECD – GPA Workshop
16 September 2020, Paris, France
ID4Africa, Spotlight on Unique Digital Identity Numbers
23 July 2020, Livecast from Paris, France

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.
New Report – Without Consent: An analysis of student directory information practices in U.S. schools, and impacts on privacy

Without Consent is the first major benchmarking privacy report to examine school directory information practices and related privacy issues in a multi-year study across more than 5,000 schools at the primary, secondary, and postsecondary levels. The research found troubling and challenging student privacy problems that need to be urgently addressed. The report contains extensive findings and recommendations regarding student privacy, and includes best practices, sample forms, and resources for schools, parents, and students.
Patient’s Guide to HIPAA: How to Use the Law to Guard your Health Privacy

Download PDF Download ePub Donate Credits → Version 2.0...