Healthcare technologies are rapidly evolving, producing new data types and innovative data uses. Data and technology can bring significant enhancements to the healthcare system, deepen patients’ and consumers’ engagement and understanding about their health, and be used as part of initiatives meant to improve health outcomes. It is critical to analyze how sensitive health and wellness data affect individual privacy and understand what it means for doctors, researchers, and companies to responsibly use such data. The FPF health team continues to build on its prior work on Consumer Wearables and Wellness Apps and Devices and Privacy Best Practices for Consumer Genetic Testing Services by exploring and addressing issues at the forefront and intersection of health, data, and privacy. Of main focus are the privacy challenges related to the collection, use, and sharing of both medical data and data that falls outside of the scope of HIPAA and FDA regulations. FPF brings together stakeholders to analyze how new technologies and data practices in the health ecosystem can impact individual privacy and promote the more effective and ethical use of data.
De-Identification: A Critical Debate
Ann Cavoukian and Dan Castro recently published a report titled Big Data and Innovation, Setting the Record Straight: De-Identification Does Work. Arvind Narayanan and Edward Felten wrote a critique of this report, which they highlighted on Freedom to Tinker. Today Khaled El Emam and Luk Arbuckle respond on the FPF blog with this guest post. […]
Comments to the FTC on Consumer Generated Health Data
Today, the Future of Privacy Forum submitted comments to the FTC on the privacy issues surrounding consumer generated health data. Noting that innovative products and services that allow consumers to generate and manage their own health information are increasingly becoming part of how consumers manage their broader health care, FPF discusses the need for a […]
White House/MIT Big Data Privacy Workshop Recap
Speaking for everyone snowed-in in DC, White House Counselor John Podesta remarked that “big snow trumped big data,” while on the phone to open the first of the Obama Administration’s three big data and privacy workshops. This first workshop focused on advancing the “start of the art” in technology and practice. While these workshops are ultimately the […]
Latanya Sweeney and Andrea Matwyshyn to Join FTC
Today, the FTC announced that the appointment of Latanya Sweeney to serve as the agency’s Chief Technologist and Andrea Matwyshyn as a Senior Policy Advisor on privacy and data security issues. Dr. Sweeney is well-known for her hardline criticism of “anonymity” in publicly released datasets. In 1997, Sweeney used seemingly anonymous medical data to demonstrate […]
What's Scary About Big Data, and How to Confront It
Any discussion surrounding the benefits–and the risks–presented by Big Data often focuses on the far-off future. The world of Minority Report is frequently invoked, but in the wake of April’s “Big Data Week,” it is time to recognize that Big Data is already here. In their recent book, Big Data: A Revolution that Will Transform […]
New Study Shows Need for De-identification Best Practices
Publically releasing sensitive information is risky. In 1997, Latanya Sweeney used full date of birth, 5 digit ZIP code, and gender to show that seemingly anonymous medical data could be linked to an actual person when she uncovered the health information of William Weld, the former governor of Massachusetts. Sweeney in a new study analyzes […]
FPF Announces Privacy Papers for Policy Makers 2012
The Future of Privacy Forum Announces Privacy Papers for Policy Makers 2012 WASHINGTON – The Future of Privacy Forum (FPF) today released the 2012 Privacy Papers for Policy Makers, highlighting eight leading privacy writings that were voted by the FPF Advisory Board to be most useful for policy makers. The papers cover a wide array […]
July 13, 2012 – 7 steps to building privacy into a health app, Government Health IT
A report published Wednesday by the Future of Privacy Forum (FPF) takes stock of many popular mobile apps, documenting which of them provide consumers with a privacy policy describing their data collection and usage.
July 12, 2012 – As healthcare apps boom, privacy best practices come to the fore, Healthcare IT News
A report published Wednesday by the Future of Privacy Forum (FPF) takes stock of many popular mobile apps, documenting which of them provide consumers with a privacy policy describing their data collection and usage.
12 pm Webinar: Recapping FPF's "Personal Information: The Benefits and Risks of De-Identification" Event
Please join Jules Polonetsky and Professor Khaled El Emam, Associate Professor, Faculty of Medicine and Canada Research Chair in Electronic Health Information, University of Ottawa, for a 12 pm Eastern webinar. Polonetsky and Professor El Emam will discuss highlights from FPF’s December 5, 2011 event on personal information and provide an analysis of the conference. […]