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The World Privacy Forum Medical Privacy ProjectA key area of focus for the World Privacy Forum is in the area of medical privacy, or health care privacy. In our medical privacy project, we are looking at a range of issues from the networking of electronic health files to DNA to medical identity theft. The focus of this project is to explore the relationship between privacy, security, confidentiality and the digitization of health data. Current areas of active research include:
World Privacy Forum research and other materials are discussed below. Spring 2009 New Consumer Resource: A Patient's Guide to HIPAA.The Patient's Guide to HIPAA is an important new resource for patients. It is a practical, strategic guide to help patients understand HIPAA. The Guide is in the form of Frequently Asked Questions and is easy to digest and use. Visit the Patient's Guide to HIPAA.
Medical Identity TheftMedical Identity Theft Page (Reports, information, news)About medical identity theft: Medical identity theft is a crime that can cause great harm to its victims. Yet despite the profound risk it carries, it is the least studied and most poorly documented of the cluster of identity theft crimes. It is also the most difficult to fix after the fact, because victims have limited rights and recourses. The World Privacy Forum published the first major report to exist on medical identity theft in 2006, and has brought the issue to national attention in subsequent years. The World Privacy Forum has been tracking medical identity theft closely since 2005. See our medical identity theft page for details of our activities in this area, and for our medical identity theft listserve resource. About the 2006 medical identity theft report and consumer tips: The World Privacy Forum report on medical identity theft is the first known report documenting this issue. The report, Medical Identity Theft: The Information Crime that Can Kill, was published May 3, 2006. In addition to the report, we have created a set of consumer tips based on the research. These consumer tips, What to do About Medical Identity Theft, include crucial new information for victims of medical identity theft, and should be considered by anyone who wants to know what to do about medical ID theft. The report is being updated and a new version will be published in 2009. About the medical identity theft testimony: The World Privacy Forum testified before the National Committee on Vital Health Statistics in August 2005. The testimony stressed the importance of building security, patient privacy, and choice into EHRs and any form of the proposed National Health Information Network due in part to the risks of medical identity theft, among other issues. Research and Resources:
National Health Information Network (NHIN)NHIN Page (Information, news, testimony, documents)About the NHIN: The National Health Information Network is a project that has been undertaken by the U.S. government to network electronic health records. We maintain a regularly updated page with news about the NHIIN. We also maintain a chronology of NHIN events and milestones for historic purposes. We have submitted comments and given testimony about the NHIN, and have conducted research regarding its implications. Source materials are listed below. About the World Privacy Forum NHIN information page: The World Privacy Forum maintains a regularly updated NHIN information page with news updates, source documents, and links to relevant material. About the World Privacy Forum NHIN timeline: This is a visual timeline that lists key events in the history and development of the NHIN. It is updated regularly as developments occur. The idea is to provide a quick visual update and briefing on the NHIN and to make the complexity of the project simple for individuals to see and understand. About our NHIN agency comments: The World Privacy Forum has submitted a number of agency comments -- including some joint comments with other groups -- that address issues raised by the NHIN. Specifically, the Forum has submitted comments urging the U.S. Department of Health and Human Services to consider the issues of medical identity theft, security, privacy, and patient choice, and records access issues. Research and Resources:
HIPAAThe primary work the World Privacy Forum has accomplished in the area of HIPAA is research on HIPAA and medical identity theft. We have also submitted comments on proposed changes to HIPAA, and we have pointed out flaws in consumer protection with HIPAA. In winter 2007 the World Privacy Forum will be publishing a substantial report relating to HIPAA. Research and Resources:
Electronic Health RecordsAbout EHRs: The transition from paper records to electronic health records raises many privacy and confidentiality issues that do not necessarily have resolutions or answers. Our discussion of this issue may be found in these materials: Research and Resources:
Genetic Privacy (research, pharmacogenomics, personalized medicine, electronic health records).Genetic privacy is an area rich with policy issues related to privacy and human rights. A few of the key policy areas include, (among many others): Genetic Privacy Page (Information, news, testimony, documents)
Research and Resources: The World Privacy Forum's work in this area has focused on the use of genetic information in research, for pharmacogenomics and personalized medicine, and in electronic health records.
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