Patient Privacy

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National Institutes of Health to do more to properly advise the research community and to protect data subjects in its draft guidance on data management and sharing.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

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Privacy Forum submitted comments to the Food and Drug Administration in response to its request for public input on its draft guidance on the cybersecurity of medical devices.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

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

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

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.