Patient Privacy

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National Institutes of Health to do more to properly advise the research community and to protect data subjects in its draft guidance on data management and sharing.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

Apr 15 2016

WPF’s comments to the FDA on cybersecurity, urges increased attention to privacy

The World Privacy Forum submitted comments to the Food and Drug Administration in response to its request for public input on its draft guidance on the cybersecurity of medical devices. The privacy considerations for medical devices is significant. Because there are a large number of stakeholders in the life cycle of cyber medical devices, the stakeholders are subject

Nov 21 2014

Video: What does “opt in” or “opt out” mean in a health information exchange?

This video is part 8 of a 14-part video series on health privacy and health information exchanges Video: I just read the privacy policy at the doctor’s office, and it said that I would have to opt out of an HIE. What does that mean exactly? Opt in and opt out are terms that are

Oct 10 2014

WPF participating in Human Rights review, civil society consultation

The World Privacy Forum will be speaking about medical and health privacy rights in the Universal Periodic Review as part of the Civil Society Consultation for the United States. The UPR is an important cyclical process run under the auspices of the UN Human Rights Council. The last UPR was in 2010. “The Universal Periodic

Aug 15 2013

Health Information Exchanges in California

WPF’s new interactive map identifies Health Information Exchanges in California. A Health Information Exchange, or HIE, is technology that enables the electronic movement of health-related information among health care providers and others. HIEs are an increasingly popular way for hospitals, pharmacies, labs, and emergency room physicians to share patient information. HIEs can exchange records across one hospital, across multiple hospitals in a region, or across a whole state. If your health information is being shared through an HIE, your lab test results, medications, medical history, or other clinical information related to your health care may be included in the sharing. See more about HIEs and our California HIE Map here.

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.