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World Privacy Forum requests adoption of a "no stakeholders left behind" policy in AHIC successor plans

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.

Public Comments: September 2007 - American Health Information Community Successor White Paper (August 2007)

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.

Update: Monster.com saying data breach may impact all users of Monster.com, official Federal job site USAJobs.com impacted

Consumer alert update -- Monster.com posted a warning on its site stating that all users of Monster.com may have been impacted by the data breach of its systems by hackers. All job seekers need to be aware of potential phishing attacks that are sophisticated and highly targeted, and job seekers with safety considerations need to be aware that their information has likely been compromised. The U.S. Office of Personnel Management has announced that the Federal job site USAJobs (which is outsourced to Monster.com) has also been impacted by the breach. The World Privacy Forum has updated its job seeking tips, and its consumer alert.

GAO's data breach list from its June 2007 report: FOIA result

Data breach | GAO data breach study -- The World Privacy Forum made an information request to the GAO asking for a copy of the single, non-duplicative list of data breaches its June, 2007 data breach report (GAO -07-737) refers to and was based on. The list was not included in the GAO report. The GAO used a figure in its report of "more than 570 data breaches" from January 2005 to December 2006 based on this non-duplicative breach list. The GAO breach list is straightforward, it tallies data breaches chronologically from January 1, 2005 to December 31, 2006 from three organizations that maintain data breach lists. If the breach appeared on at least one of the three lists, it was apparently included in the final tally. The GAO states that the list was based on a February 15, 2007 download of the lists. Note: the WPF scan of the GAO list includes the first page twice. The front page of the scan is of the GAO list as it looks in the original document, and then the list was scanned for maximum readability into PDF format.

World Privacy Forum and EFF submit comments on AHRQ plan for national healthcare database

AHRQ / databases | medical privacy -- In June, the Agency for Healthcare Research and Quality (AHRQ) published a request for information about its plan to create a "public/private" national database of healthcare information tentatively called the "National Health Data Stewardship entity." WPF and EFF raised questions about ownership and management of the proposed database (Would this database fall under HIPAA? Would it fall under the Privacy Act of 1974?), questions about identifiability of patients in the database, and suggested that a full-time, independent privacy officer should be established for the program from the inception of the planning stages. The comments also discussed the numerous questions relating to data security (including medical identity theft) and data quality, as well as consent, access, and opt-out procedures for patients that the proposed national database raises.

Consumer Alert: Monster.com data breach impacts hundreds of thousands of job seekers; job seekers who have safety concerns may be especially at risk

Consumer Alert | Internet privacy | Job search safety and privacy -- The World Privacy Forum issued a consumer alert today warning about a data breach at Monster.com. Security firms that analyzed the breach have stated the breach impacts hundreds of thousands of job seekers. The immediate information that was stolen included job seekers' home address, phone numbers, email address, and resume IDs. Some victims may have received further phishing emails. Job seekers who have safety concerns such as law enforcement professionals, victims of domestic violence and other victims of crimes such as stalking -- who typically do not make their home addresses or personal phone numbers public -- have an immediate need to know if their personal information may be in the hands of criminals. The consumer alert contains tips for victims and links to resources and more information.

Public Comments: August 2007 - AHRQ Joint Comments .....World Privacy Forum and EFF submit comments on AHRQ plan for national healthcare database

In June, the Agency for Healthcare Research and Quality (AHRQ) published a request for information about its plan to create a "public/private" national database of healthcare information tentatively called the "National Health Data Stewardship entity." WPF and EFF raised questions about ownership and management of the proposed database (Would this database fall under HIPAA? Would it fall under the Privacy Act of 1974?), questions about identifiability of patients in the database, and suggested that a full-time, independent privacy officer should be established for the program from the inception of the planning stages. The comments also discussed the numerous questions relating to data security (including medical identity theft) and data quality, as well as consent, access, and opt-out procedures for patients that the proposed national database raises. Read the joint comments (PDF)

World Privacy Forum responds to June 2007 NCVHS recommendations to the Secretary of HHS regarding health care information at non-HIPAA covered entities

Medical privacy | NCVHS | HIPAA -- The World Privacy Forum has sent a letter to Dr. Simon P. Cohn, Chairman of the National Committee on Vital and Health Statistics, supporting the Committee's formal conclusion that all entities that create, compile, store, transmit, or use personally identifiable health information should be covered by a federal privacy law. More needs to be done about health care data that is left unprotected by HIPAA. The Forum's letter included a discussion of two HHS programs that operate outside of HIPAA: FDA RiskMAPS, and the National Institutes of Health, which is not a covered entity under HIPAA.

Public Comments: August 2007 - NCVHS letter Update to privacy laws and regulations required to accommodate NHIN data sharing practice

We particularly note the Committee’s observation that the non-covered entities “may even sell personal health information without authorization for the purpose of marketing or other purposes that consumers may find objectionable.” The World Privacy Forum agrees with the Committee, and believes that the use of identifiable patient health care information for marketing is a disturbing possibility. New institutions are being developed and implemented to exploit gaps in HIPAA that allow use of patient data for marketing purposes. Action to close those gaps is needed urgently. The Committee’s letter is a small step in that direction.

World Privacy Forum testifies at FDA advisory committee hearing on the iPledge program; requests attention to privacy issues

iPledge Program | FDA -- The World Privacy Forum testified before the Dermatologic and Ophthalmic Drugs Advisory Committee and the Drug Safety and Risk Management Advisory Committee of the Food and Drug Administration regarding privacy issues related to iPledge, a mandatory program for patients taking the drug Accutane or isotretinoin generics. The FDA has stated that the program, which it requires four drug manufacturers to have in place, does not fall under HIPAA. The program collects substantive amounts of patient information. The Forum urged the FDA to set privacy standards for all RiskMAPs in general, and to resolve privacy issues in the iPledge program specifically. The Forum requested that all marketing provisions of the iPledge program privacy policy be removed, that patients be expressly informed the program does not fall under HIPAA, and that patients be given a printed copy of the iPledge program privacy policy, among other requests.

Public Comments: August 2007 - iPledge Program / FDA ..... World Privacy Forum testifies at FDA advisory committee hearing on the iPledge program; requests attention to privacy issues

Our principal concern with iPledge is that the FDA has failed to set privacy standards for the iPledge program [2] or for similar programs that mandate patient tracking. As a result, the iPledge registry has privacy shortcomings that may potentially impact the individuals who take Accutane or Isotretinoin generics.

World Privacy Forum requests that the new National Disaster Medical System protect all patient information to standards at least equal to HIPAA

National Disaster Medical System | Privacy Act of 1974 -- The World Privacy Forum has filed public comments with the Department of Health and Human Services requesting that its new National Disaster Medical System protect all patient information to at least the baseline protections that HIPAA affords, including the HIPAA security and privacy protections. Currently, the new system does not do this, even though the system is housed at HHS, the agency which promulgated the HIPAA standards. The National Disaster Medical System currently contains overbroad routine uses which could potentially result in significant privacy and even public health issues. For example, public health information will not be able to be disclosed under the National Disaster Medical System as the system is currently organized. Additionally, some of the current routine uses in the system would authorize disclosures that would be illegal under HIPAA. For example, Congressional disclosure of a HIPAA record requires a written authorization, something the new system does not require.

Public Comments: July 2007 - WPF requests that the new National Disaster Medical System protect all patient information to standards at least equal to HIPAA

The World Privacy Forum has filed public comments with the Department of Health and Human Services requesting that its new National Disaster Medical System protect all patient information to at least the baseline protections that HIPAA affords, including the HIPAA security and privacy protections. Currently, the new system does not do this, even though the system is housed at HHS, the agency which promulgated the HIPAA standards. The National Disaster Medical System currently contains overbroad routine uses which could potentially result in significant privacy and even public health issues. For example, public health information will not be able to be disclosed under the National Disaster Medical System as the system is currently organized. Additionally, some of the current routine uses in the system would authorize disclosures that would be illegal under HIPAA. For example, Congressional disclosure of a HIPAA record requires a written authorization, something the new system does not require.

World Privacy Forum's Top Ten Opt Out List

Top ten opt out list -- This is a list of what top things to opt out of, and how to opt out. Millions of people have heard about the Do Not Call list, an opt out list that gets people off of telemarketing lists. But many fewer people have heard about the other opt outs that are available, like those that can take people out of data broker lists or opt outs that can stop schools from giving out directory information like email and home addresses. Opting out can range from the not-too-difficult (the Do Not Call list is a fairly simple opt out) to the challenging. This list is meant to simplify the information about which opt out does what, to help decide if a particular opt out is the right choice, and how to go about opting out.

Archived WPF Privacy Policy 2007- 2009

This privacy policy applies to the World Privacy Forum web site, www.worldprivacyforum.org. This privacy policy may change from time to time in response to new laws, to changes made to the web site, or otherwise. The World Privacy Forum reserves the right to make changes to the policy, but does not anticipate making major adjustments to the approach outlined here.

Public Comments: June 2007 - FDA/AHRQ Public Workshop, Implementation of Risk Minimization Action Plans to Support Quality Use of Pharmaceuticals: Opportunities and Challenges

The FDA has not paid attention to privacy standards that should be applied to RiskMAP programs. Unfortunately, this lack of FDA attention has resulted in inappropriate and unethical marketing to patients using patient information gathered for treatment purposes. If these marketing activities were being conducted by HIPAA-covered entities, the activities would be illegal. These activities may well be illegal in California, which has a strong state-level medical privacy law that goes beyond HIPAA.

How to place a security freeze (credit freeze)

Security freeze | identity theft | financial privacy -- A credit freeze (sometimes called a security freeze) lets you stop the disclosure of your credit report by a credit bureau. A credit freeze can be especially helpful to individuals who are having persistent problems with identity theft. If you live in a state with a security freeze law, then you may be able to place a security freeze on your files. This World Privacy Forum resource gives general background on security freezes, lists the states with security freeze laws, and links to more information for each state.

The FDA needs to set privacy standards to protect patients in drug risk programs

FDA privacy standards - RiskMAPs - World Privacy Forum executive director Pam Dixon testified at an FDA/AHRQ joint public workshop about the need for the FDA to set robust privacy standards for drug risk minimization programs, which are put in place for drugs the FDA has determined to be high risk in some way. Drug risk minimization programs (like the iPledge program for the acne drug Accutane) are not typically covered by HIPAA, and some programs have a privacy policy that allows marketing use of patient information collected as part of the risk program. This kind of marketing activity would not be allowable if the programs fell under HIPAA, and Dixon's testimony stated that patients in these programs should have the same kinds of privacy protections as HIPAA covered programs, and that marketing activities involving patient information should not be allowable in these programs.

World Privacy Forum makes presentation at National Academy of Sciences' Institute of Medicine

Genetic privacy -- Executive director Pam Dixon presented key issues and potential solutions regarding privacy and Genome Wide Association Studies at the Institute of Medicine's Board on Health Sciences Policy meeting. Her presentation included recommendations to engage in a comprehensive study of certificates of confidentiality, to encourage standards of identifiability, to encourage study of what more uniform standards of privacy and security for researchers might look like, and a recommendation to work toward broad solutions that extend beyond GWAS activities.

World Privacy Forum Comments on AHIC Confidentiality, Privacy, Security Workgroup Hypothesis

AHIC - National Health Information Network -- The American Health Information Community Workgroup on Confidentiality, Privacy and Security requested public feedback regarding its working hypothesis. WPF responded to the request with public comments encouraging the adoption of a unified policy architecture and encouraging AHIC to focus on enforcement mechanisms that are intended to directly benefit consumers. WPF also encouraged AHIC to look comprehensively at the demands a new national electronic health exchange network will make on privacy in the health care sector.

Public Comments: June 2007 - To The American Health Information Community Confidentiality, Privacy, and Security (CPS) workgroup on its Working Hypothesis

The American Health Information Community Workgroup on Confidentiality, Privacy and Security requested public feedback regarding its working hypothesis. WPF responded to the request with public comments encouraging the adoption of a unified policy architecture and encouraging AHIC to focus on enforcement mechanisms that are intended to directly benefit consumers. WPF also encouraged AHIC to look comprehensively at the demands a new national electronic health exchange network will make on privacy in the health care sector.

World Privacy Forum files public comments and recommendations on pharmacogenomics privacy: all patient-specific PGx research should require certificates of confidentiality

information will expand greatly in the future. In public comments filed with the National Institutes of Health on pharmacogenomics (PGx) research, or research using genetic information to create highly personalized medicine, the World Privacy Forum recommended that all research activities that involve any type of patient-specific genetic information be required to have certificates of confidentiality, whether that information appears identifiable or not. The WPF also urged the NIH to require strong data use agreements to protect individuals' privacy. The WPF also urged NIH and the Department of Health and Human Services to reinstate the position of "privacy advocate" so as to provide oversight in this area.

Public Comments: May 2007 - NIH....World Privacy Forum files public comments and recommendations on pharmacogenomics privacy: all patient-specific PGx research should require certificates of confidentiality

The World Privacy Forum believes that the capability of identifying individuals from subsets of genetic information will expand greatly in the future. In public comments filed with the National Institutes of Health on pharmacogenomics (PGx) research, or research using genetic information to create highly personalized medicine, the World Privacy Forum recommended that all research activities that involve any type of patient-specific genetic information be required to have certificates of confidentiality, whether that information appears identifiable or not. The WPF also urged the NIH to require strong data use agreements to protect individuals' privacy. The WPF also urged NIH and the Department of Health and Human Services to reinstate the position of "privacy advocate" so as to provide oversight in this area. Read the comments (PDF). For more information, see the genetic section of the WPF Medical Privacy Page.