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%Begin About Us World Privacy Forum Skip to Content Javascript must be enabled for the correct page display Home Connect With Us: twitter Vimeo email Main Navigation Hot Topics
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The organization is focused on conducting in-depth research, analysis, and consumer education in the area of data privacy, and focuses on pressing and emerging issues. It is among one of the only privacy-focused NGOs conducting independent, original, longitudinal research.
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The World Privacy Forum has had notable successes with its research, which has been groundbreaking and consistently ahead of trends. World Privacy Forum research has provided insight in important issue areas, including predictive analytics, medical identity theft, data brokers, and digital retail data flows, among others. Areas of focus for the World Privacy Forum include technology and data analytics broadly, with a focus on health care data and privacy, large data sets, machine learning, biometrics, workplace privacy issues, and the financial sector.
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The Forum was founded in 2003 and works both nationally and internationally. The Forum also works to encourage collaborative efforts among other non-profits.
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Funding
The World Privacy Forum is funded by the Rose Foundation Consumer Privacy Rights Fund, the California Consumer Protection Foundation, by Cy Pres privacy settlements, general support funding from corporations, and by individual donations.World Privacy Forum Activities
A brief selection of our present and past activities includes: WPF is a leading researcher about privacy and data analytics, including big data, predictive analytics, consumer scoring, and the data broker industry. We have published major reports about the issue, and have testified before Congress about privacy and data brokers now three times.
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Our reports include The Scoring of America (2014), and Data Brokers and the Federal Government (2013). The reports have been frequently cited, including in the White House Big Data report.
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WPF is a leading researcher about health privacy, including the subareas of genomic and pharmacogenomic privacy, electronic health records, digital health data flows, sensor-driven biometric data, medical privacy regulation, the Common Rule and human subject research, and other emerging health data flows, issues, and practices. The Executive Director of WPF currently serves as an expert advisor to the OECD on a health privacy advisory group.
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Previously, WPF has served as an appointee or board member on US national and state-level health privacy boards. WPF conducted extensive biometric field research in India regarding it’s Aadhaar digital ID, which is the world’s largest biometric ID ecosystem. WPF’s India work formed the basis of a peer-reviewed scholarly article on India’s Aadhaar which was published in 2017.
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Specifically, A Failure to Do No Harm was published in a special issue of Springer-Nature and co-published in the Harvard-based Journal of Technology Science. The World Privacy Forum researched and published the first major report on medical identity theft and brought this crime to the attention of the public for the first time.
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The World Privacy Forum coined the term “medical identity theft” in its report on the topic. The Forum also has published the only detailed consumer education and victim materials on this crime. California passed a new law that went into effect in 2008 based on the recommendations in the WPF medical identity theft report, which later became part of HIPAA.
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The World Privacy Forum’s continuing activities in this area have made a substantial impact in the awareness and understanding of this crime for both victims and health care providers. Consensus and multistakeholder work: WPF is participating in a multinational consensus effort to develop governance for AI systems (IRGC, Zurich, Switzerland) in 2018.
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WPF’s Pam Dixon was named as an expert advisor on health data uses to the OECD, where she has worked with global stakeholders on health privacy and health data protection. WPF was the lead drafter of the US Department of Commerce NTIA Multistakeholder Process short form privacy notice during 2012-2013.
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The process finished with a completed short form notice to be used by mobile apps. The notice is now being tested and implemented.
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This notice provides important and innovative privacy improvements. Among the most important is that consumers receive notification when their information is being sent off of their mobile devices to data brokers.
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This is the first notice to allow for this transparency. In 2011, WPF led the nation’s leading civil society groups in developing the Civil Society Multistakeholder Principles for the White House/US Department of Commerce Privacy process.
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The World Privacy Forum led a consensus group of non-profits in 2007 meeting that culminated in the now well-known Do Not Track proposal presented to the Federal Trade Commission. Do Not Track is an idea that is now known globally and being tested and discussed in a variety of forums, including W3C.
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WPF broke new ground in publishing the first report on privacy in digital signage networks and mobile device tracking in retail spaces in the One Way Mirror Society report. The report was easily three or more years ahead of trends.
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WPF held a major privacy conference in Tokyo, Japan in 2008, which facilitated meaningful dialogue and information sharing between key Japanese, Asian, EU, and US experts at a pivotal time in privacy in Japan. In 2012, WPF published an interactive map documenting health information data flows for California. This map was the first of its kind, and has been updated and the information expanded.
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The World Privacy Forum published the first in-depth legal and policy analysis of patient and consumer medical files held outside the protections of HIPAA, an area of increasing importance. The World Privacy Forum has researched and presented leading-edge thinking about genetic privacy to the Institute of Medicine and to the Secretary’s Advisory Committee on Genetics, Health and Society, among others. WPF’s testimony before the Secretary’s Advisory Committee on Genetics in winter 2008 led to substantive positive changes in recommendations about privacy and genetics in the SACGHS report.
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The World Privacy Forum has been appointed by the state of California to a board tasked with finding innovative ways to protect patient privacy and security in the rapidly modernizing health care sector. The World Privacy Forum serves as co-chair for this board, the California Privacy and Security Advisory Board. The World Privacy Forum researched and testified twice about the iPledge program in 2007.
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iPledge is a mandatory registration system for people who take the acne drug Accutane, which had systemic privacy issues. The WPF was the only organization to point out the profound privacy problems in the system.
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After the World Privacy Forum analysis and testimony, the FDA asked for substantive changes to the privacy for the system, which impacts approximately 300,000 people a year. The World Privacy Forum researched and published a series of longitudinal research reports and related work in the area of job search privacy, which has led to significant changes and improvements in the oversight of fraud at online job sites. The World Privacy Forum publishes key consumer education resources, including the Top Ten Opt Out list, Search Engine Privacy Tips, Resume Privacy Tips, Tips for Victims of Medical Identity Theft, tips on Security Freezes, and much more.
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The World Privacy Forum published a series of research reports on free credit reports that led to FTC enforcement actions against “imposter domains.”
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Pam Dixon, Executive Director Pam Dixon is the founder and executive director of the World Privacy Forum, a public interest research group known and respected for its consumer and data privacy research. An author and a researcher, Dixon has written groundbreaking studies in the area of privacy, including The Scoring of America, a report on predictive analytics and privacy written with Bob Gellman. She has also written influential reports on Medical Identity Theft as well as the One Way Mirror Society, a report on digital signage networks, and a series of reports on data brokers, among others.
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Dixon has conducted substantive biometrics and identity research in India, which formed the basis of a scholarly article about India’s Aadhaar, the world’s largest biometric ID system. In 2017, A Failure to Do No Harm was published in a special issue of Springer-Nature and co-published in the Harvard-based Journal of Technology Science. Dixon has written 9 books, including titles for Random House / Times Books, among other major publishers.
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Her most recent book, Surveillance in America, was published in 2016 by ABC-CLIO books. Her next book on privacy is underway and will be published by ABC CLIO in 2019. Dixon has written numerous other influential studies, including studies in the area of health, financial, online, biometric, digital signage, and workplace privacy.
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Dixon is an expert advisor to the OECD regarding health data uses. In 2015 she was appointed to the editorial board of Harvard’s Technology Science journal.
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Dixon served as co-chair of the California Privacy and Security Advisory Board, a board that reported to California’s Secretary of Health. She is also a past board member of HITSP, a national-level board for determining health information technology standards.
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In 2008, Dixon won the Consumer Excellence Award. Dixon was formerly a research fellow with the Privacy Foundation at Denver University’s Sturm School of Law.
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There, she researched and wrote about technology-related privacy issues. Dixon has written extensively about technology both as a researcher and as a book author.
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Ms. Dixon has written nine books for major publishers, including two critically acclaimed books about technology and consumers.
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Her books include titles for Random House / Times Books, ABC/CLIO, and Wiley, among other major publishers. Dixon’s most recent book, Surveillance, was published in 2016 by ABC/CLIO.
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Dixon co-authored Online Privacy , a reference book, with longtime writing collaborator Robert Gellman. Dixon has testified before Congress and Federal agencies, speaks internationally as a leading privacy expert, and is frequently quoted in the media regarding privacy and security issues.
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A selection of her press clippings are located here. Marianne Fitzpatrick, MBA, Senior Project Manager Marianne joins the World Privacy Forum in the position of Senior Project Manager. Her responsibilities include performing project management activities to ensure strategic objectives are achieved in a timely manner and accurately for the Forum.
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Marianne is an MBA-degreed professional with managerial experience most recently at JP Morgan Chase supporting the Bank’s attorneys through Program Management activities such as: Chair, Weekly Operational Breaks Resolution Meetings with Legal, Senior Operations Managers, Audit and Compliance as well as other delegates from around the world. Led Semi Annual Unit Response to Corporate Audit and Compliance for Sarbanes Oxley (SOX).
Change Management Unit Lead. Led Executive Complaints Resolution for items in a litigation status with the Bank, for example, Congressional, Office of Consumer Complaints.
Change Management Unit Lead. Led Executive Complaints Resolution for items in a litigation status with the Bank, for example, Congressional, Office of Consumer Complaints.
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Policy and Procedure Subject Matter Expert (22 Unit Process Documentation Kits). Led Litigation projects such as Uniform Data Business Analytics, Washington Mutual Litigation Account conversion, Thin Client Conversion, Business Continuity Plan Development and more.
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While at Chase, Marianne was selected as the 2009 Chase Portrait Honoree for outstanding demonstration of core values. She also received Multiple Top-Performer Awards and Honors and the Unit Scorecard was an Exceeds rating during her time at Chase. Bob Gellman, Consultant Bob has been a key author and collaborator on many WPF reports and projects.
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He is the co-author with Pam Dixon of the reference book Online Privacy (ABC-CLIO, 2011). Since 1995, Bob has assisted large and small companies, organizations, U.S.
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government agencies, and foreign governments to develop, implement, and maintain policies for personal privacy and fair information practices. Specialty areas include privacy policy for health (including HIPAA), the Internet and Internet websites, the homeless (HMIS), and other for-profit and non-profit organizations; freedom of information policy, and other information policy areas. Bob’s full bio and extensive writing can be found here at BobGellman.com.
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Blake Hamilton, Media and Communications Fellow Blake Hamilton is a photojournalist and investigative reporter. Blake’s experience includes work at the University of Oregon’s Daily Emerald Newspaper and his international portfolio includes an outstanding short documentary on the Chilean Salmon Farming Industry.
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Other photography work includes contributions to Ethos Magazine, a student-run quarterly magazine, at the University of Oregon, where he also worked as a photo editor. In this position, Blake established an online version of the magazine. The website recently won the Columbia Scholastic Press Association’s Collegiate Digital Magazine Silver Crown.
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Blake has lived in Argentina and Chile, is fluent in Spanish, and lives in San Diego, California. John Emerson, Consultant: Web and Data Visualization John Emerson of Backspace Design Consultancy has created many WPF data visualizations, including our interactive Medical ID Theft Data map and our HIE map.
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He did a beautifully conceived and complete redesign of the decade-old static WPF web site and migrated us to a dynamic site.
News Media and Press Room
Visit the News, Media and Press Room See a list of WPF press mentions over the history of the organization. WPF updates and news CALENDAR EVENTSWHO Constituency Meeting WPF co-chair
6 October 2022, VirtualOECD Roundtable WPF expert member and participant Cross-Border Cooperation in the Enforcement of Laws Protecting Privacy
4 October 2022, Paris, France and virtualOECD Committee on Digital and Economic Policy fall meeting WPF participant
27-28 September 2022, Paris, France and virtual more Recent TweetsWorld Privacy Forum@privacyforum·7 OctExecutive Order On Enhancing Safeguards For United States Signals Intelligence Activities The White House https://www.whitehouse.gov/briefing-room/presidential-actions/2022/10/07/executive-order-on-enhancing-safeguards-for-united-states-signals-intelligence-activities/Reply on Twitter 1578431679592427526Retweet on Twitter 1578431679592427526Like on Twitter 1578431679592427526TOP REPORTS National IDs Around the World — Interactive map About this Data Visualization: This interactive map displays the presence...
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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.
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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.
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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.
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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.
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