WPF provided detailed comments to the US Department of Health and Human Services regarding its proposal for changes to HIPAA regarding modifications to the Privacy Rule. Specifically, HHS proposed modifications to standards for the privacy of individually identifiable health information. WPF supports many of the changes proposed in the NPRM.
The World Privacy Forum (WPF) submitted comments on an important Notice of Proposed Rulemaking that proposes modifications of the protection requirements for substance use disorder (SUD) treatment records. Currently, health records regarding treatment for Substance Use Disorders receive special protections under what is called Part 2 regulations , or, 42 ...
July 2022 Download a PDF The World Privacy Forum publishes and maintains A Patient’s Guide to HIPAA , which is a plain language explanation of how to use the law to guard your health privacy. This companion FAQ on HIPAA is focused on reproductive health privacy in response to the ...
The U.S. Occupational Safety and Health Administration (OSHA) has published its proposal regarding how employee vaccination information will be treated by employers. WPF's analysis has found a meaningful loophole in privacy protections, and has proposed a remedy to OSHA.
WPF filed comments today with the Department of Health and Human Services regarding an important Notice of Proposed Rulemaking that, if adopted, will bring substantial changes to patients' electronic health records and how they are managed, among other issues. In general, we found much to support in the NPRM. However, ...
The World Privacy Forum has submitted comments to the FTC regarding its proposed consent order In the Matter of Flo Health, Inc. requesting that the FTC conduct further analysis regarding the FTC Health Data Breach Rule and its potential applicability to the alleged unconsented sharing of women's pregnancy, menstruation, mental ...
This summer, the World Privacy Forum served as a member of the World Health Organization’s External Expert Group on Data Principles . We are pleased to announce that WHO has now published its updated data principles and data sharing policy, as of October 2020. While there are additional items that ...
WPF Executive Director Pam Dixon will testify before the full committee of the National Committee on Vital and Health Statistics (NCVHS) regarding emerging privacy concerns in the healthcare environment, including the role of artificial intelligence, patient authorizations, and automated access to patient health information. The NCVHS is the statutory [42 ...
The US Department of Health and Human Services (HHS) has produced a set of cybersecurity resources for healthcare provider organizations from small to large. So far, HHS has published four documents: an overview report of cybersecurity issues and practices, two technical volumes, and a toolkit. The documents focus on what an expert multistakeholder consensus group determined to be the five most prevalent cybersecurity threats and the ten core cybersecurity practices. The practices are voluntary, and utilize the NIST cybersecurity framework. The documentation is based in reality, not conjecture, and the documents are not intended to sell any particular products for any particular vendor. This has allowed for a rich and helpful documentation of current challenges along with solutions. See our overview of the four new resources.
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 ...
This FAQ, glossary, and tipsheet about Health Information Exchanges is designed to work in tandem with our HIE map and directory of California HIEs, available here. If you have questions about HIPAA beyond those answered here, please see our extensive resource, A Patient's Guide to HIPAA.
Joint Comments on HIEs -- California has proposed regulations for health information exchange projects in the state. WPF has submitted comments encouraging more privacy protections, and we are joined in our comments by Privacy Activism and the Center for Digital Democracy. One key request in the comments is that California not allow patient consent to be waived in HIE projects. We are also requesting that California create a unified web listing of its HIE projects for increased transparency and to facilitate patient access to HIE information and policies.
Data brokers -- WPF will be speaking at the CFP conference on two panels. On June 15, Pam Dixon will participate in a plenary session on data brokers. On June 16, Dixon will moderate a health care privacy panel. This panel will focus on electronic health care in the state of California and the current privacy issues in electronic health exchange.
California health privacy -- The World Privacy Forum, as co-chair of the California Privacy and Security Advisory Board, was pleased to vote on an opt-in privacy standard for Californians in the June CalPSAB board meeting. The standard will be part of a set of guidelines the state of California uses in its development of electronic health care records. This set of guidelines was the culmination of two years of policy work with the CalPSAB board.
The World Privacy Forum filed comments with the US Department of Health and Human Services today in response to its Request for Information about possible changes to the HIPAA health privacy rule. WPF strongly supported patients' current right to request a history of disclosures of their medical files, and requested an expansion of this right. WPF noted in its comments to HHS that "An individual cannot fully protect his/her privacy interest in a health record (and most other records) unless he/she has a right of access to the record, the right to propose a correction, and the right to see who has used the record and to whom it has been disclosed. Each of these elements is essential."
Health privacy and HIPAA -- The World Privacy Forum filed comments with the US Department of Health and Human Services today in response to its Request for Information about possible changes to the HIPAA health privacy rule. WPF strongly supported patients' current right to request a history of disclosures of their medical files, and requested an expansion of this right. WPF noted in its comments to HHS that "An individual cannot fully protect his/her privacy interest in a health record (and most other records) unless he/she has a right of access to the record, the right to propose a correction, and the right to see who has used the record and to whom it has been disclosed. Each of these elements is essential."
Data Breach | HHS HITECH Breach Notification -- The World Privacy Forum filed comments on the HHS data breach rulemaking and asked for substantive changes in several areas. In particular, WPF asked HHS to expressly state a requirement for a breach risk assessment in the final rule itself, and to set a requirement that the risk assessment must be conducted by an independent organization. The WPF also asked that HHS set breach risk assessment standards so that there is some uniformity and guidance as to what constitutes an appropriately rigorous risk assessment when a breach occurs. In the comments, WPF also discussed the relationship between medical identity theft and medical data breach and how this impacts patients and consumers.
Health data breach rulemaking -- The Federal Trade Commission has issued its final Health Breach Notification Rule for vendors of Personal Health Records and related entities, as required under ARRA, The American Recovery and Reinvestment Act of 2009. The initial proposed Health Breach Notification Rule was generally thoughtful and thorough. The World Privacy Forum submitted extensive comments on the proposed rule both supporting parts of it and making some suggestions for changes. The FTC incorporated several specific WPF suggestions into the final rule. In particular, the FTC incorporated the applicability of the rule to foreign entities with U.S. customers (Final Rule p. 17), and the applicability of the rule to search engines appearing on Personal Health Record web sites (Final Rule p. 34). The new rule will be published in the Federal Register shortly; until then, it is available at the FTC web site. Also available is a form that entities covered under this rule can use to report data breaches to the FTC. The Health Breach Notification Rule will be effective 30 days after publication in the Federal Register, and full compliance with the rule will be required beginning 180 days after publication.
“This guide is not just a retread of what HIPAA is and does,” said Pam Dixon, executive director of the World Privacy Forum. “Our guide gives patients practical details and strategies on how they can use the law to protect their privacy and navigate the medical system. Best of all, it is easy to use.”
Medical ID theft -- Based on interviews with numerous victims and others involved in the crime of medical identity theft, and based on our own work with victims, the World Privacy Forum has added some new information to its 2006 consumer tips for medical identity theft. We have also slightly updated some of the older tips based on new information. The Forum has also updated its medical identity theft landing page to reflect our new and ongoing work in this area.
New publication | PHRs and privacy -- The World Privacy Forum has published a new legal and policy analysis examining Personal Health Records -- or PHRs -- and the privacy issues associated with them. This analysis, Personal Health Records: Why Many PHRs Threaten Privacy, was prepared by Robert Gellman for the World Privacy Forum. The analysis finds that significant, serious threats to privacy exist in some PHRs.
Announcement | CalPSAB -- WPF executive director Pam Dixon has been appointed by California Secretary of Health and Human Services Kim Belshe to the California Security and Privacy Advisory Board. Dixon will serve as interim co-chair of the board, which is tasked with addressing health information exchange (HIE) privacy and security efforts in California. The board's meetings will be open to the public.
Version 1: October 16, 2007 The World Privacy Forum, as part of its ongoing in-depth research into medical identity theft issues and responses, has outlined 8 best-practice responses to the crime by the health care sector. These best practices are based on interviews with victims, providers, and other stakeholders. These ...
NHIN update -- The National Health Information Network, or NHIN, is part of a major undertaking to digitize and network the health care sector. From electronic health records to multi-state health information hubs, the U.S. government's goal is to modernize and move health care information from paper to digital. The Department of Health and Human Services is the primary mover behind this initiative, which is complex and multi-faceted. The World Privacy Forum keeps a chronology of NHIN events as a public service. The NHIN timeline has been updated to reflect changes in AHIC, a group that is charged in part with ensuring privacy and confidentiality in the NHIN and other aspects of health care modernization. AHIC is set to transition to a "public-private partnership," a move that will need to be watched closely to ensure robust consumer involvement.
AHIC successor | health care privacy -- The World Privacy Forum offered public comments on HHS' American Health Information Community (AHIC) successor plans, urging that HHS adopt a "no stakeholders left behind" policy as it forms the new public/private AHIC. The Forum's analysis of the AHIC Successor White Paper concluded that the current succession plans lack processes and checks that would ensure meaningful consumer participation, and that the AHIC successor plans as they currently stand do not bode well for a robust role for privacy or consumer groups in the new AHIC. Specific issues the World Privacy Forum discussed in its comments included fee structures, membership, handling conflicts of interest, stakeholder issues, privacy and identifiability issues, and the need for the new AHIC to achieve credibility.