WPF Comments on Genomic Data Sharing Policy for sharing, for research purposes, of large-scale human and nonhuman genomic data (NIH) Background: The National Institutes of Health published a draft Data Sharing Policy for human and non-human genomic data. The sharing is for research purposes. The World Privacy Forum comments focus on human genomic privacy. Our
San Diego, CA — The World Privacy Forum is very pleased to announce the publication of a major undertaking, the complete update and revision to our landmark Patient’s Guide to HIPAA. The new guide reflects the changes in HIPAA that took effect September 23, 2013. The Patient’s Guide to HIPAA is a landmark publication because it is the first and to our knowledge — only complete guide written expressly for patients. It offers a roadmap through the thicket of dense health privacy laws and rules that many patients have questions about. The purpose of this guide is to help patients understand how to make health privacy laws work to protect their privacy. Longtime World Privacy Forum contributor Bob Gellman is primary author of the Guide, including the new version. Begin exploring the update at the HIPAA Guide Home: http://www.worldprivacyforum.org/2013/09/hipaaguidehome/ .
In this guide, we talk about laws, rules, regulations, act, and statutes. Lawyers can find real and technical differences between these terms, but the differences don’t matter much to patients. For our purposes, the terms are generally interchangeable references to legally binding policies or obligations.
Introduction and Purpose
Part I: Learning About HIPAA
Part II: Basic Patient Rights
Part III. What You Should Know about Uses and Disclosures
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.