Human Subjects Research Protection (OHRP) — The World Privacy Forum filed comments with the Office of Human Research Protection urging the office to do more to protect the privacy of people who are subjects of research. The comments urge the OHRP to focus more attention on providing privacy-specific training for boards overseeing research, which are often weak in knowledge about the breadth of privacy issues in research. The WPF also voiced its strong support for certificates of confidentiality for research involving human subjects, stating that “nearly all research that involves identifiable health data or other personal data about individuals should have a certificate of confidentiality unless a researcher can state a substantive reason why a certificate is not appropriate for the study.”
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.
Personal health records – or PHRs – are a relatively new phenomenon in health care today. As discussed here, a PHR is a health record about a consumer that includes data gathered from different sources (e.g., health care providers, insurers, the consumer, and third parties such as gyms and others) and is made accessible, often online, to the consumer and to those authorized by the consumer. Businesses large and small are moving to take advantage of the potentially lucrative new business model PHRs provide, especially as leveraged through the Internet. Some of the newest PHR players include large and well-known technology companies, but some health care providers, insurers, and employers also promote PHRs. There are dozens of different PHR vendors.
The HIPAA privacy rule provides a degree of privacy protection for covered health records. The rule has problems and gaps, but it does establish minimum national privacy standards for disclosure, access, correction, and other elements of fair information practices. State laws that provide additional privacy protections remain in effect and can provide additional legal protections for privacy.
Many people are aware that health information may be privileged, but few – including some physicians – fully understand what that means. The physician-patient privilege (and the sometimes separate psychotherapist-patient privilege) offers some protections for confidential communications between physician and patient.