It is widely recognized that developments in health information technology (HIT) have the potential to improve health care quality, reduce costs and empower consumers to play a greater role in their own care. However, little progress has been made on resolving the privacy issues associated with the growing liquidity of personally identifiable health information.
CDT’s Health Privacy Project will take on key policy questions, including: the proper role of notice and consent, the right of patients to access their own health records in electronic formats, identification and authentication, secondary uses, and enforcement mechanisms. It will address both the traditional exchange of records among providers and payers, as well as new consumer access services and Personal Health Records.
CDT's Health Privacy Project Releases Paper on De-identification of Personal Health Data - CDT's Health Privacy Project today released a paper advocating the need for stronger standards for "de-identified" personal health information when used for medial research, to promote public health, or other specialized purposes. The paper notes that stronger standards are needed to ensure the "de-identified" data cannot be re-identified in order to maintain patient privacy and build trust in the health care system. CDT's paper makes several policy recommendations on how to strengthen current de-identification standards found in the Health Insurance Portability and Accountability Act Privacy Act and increase the use of anonymized data for many health care purposes. June 25, 2009
Share this articleCDT Files Comments on Health Information Technology Extension Program - CDT filed comments with the Department of Health and Human Services (HHS) regarding the proper role of regional extension centers in supporting privacy and security protections for health data. This year's stimulus legislation called for the creation of nonprofit extension centers to disseminate best practices and offer training and technical assistance to health care providers seeking to adopt health information technology systems. In the comments, CDT urged HHS to explicitly require the extension centers to include privacy and security as components of their training and assistance services. CDT's comments also urged HHS to position extension centers as an interface between health care providers and newly-established HHS regional privacy officers. June 12, 2009
Share this articleCDT: Comprehensive Privacy and Security Framework Needed for Personal Health Records - CDT testified today before the National Committee on Vital and Health Statistics (NCVHS) to advocate consistent and comprehensive privacy and security protections for all personal health records (PHRs). CDT recommends that a consistent set of regulations apply to all PHRs, regardless of whether the vendor is covered under HIPAA, and warns that the HIPAA Privacy Rule is not an appropriate safeguard for PHRs because it does not adequately address the unique privacy concerns raised by these records. CDT further recommends that policymakers start with the Markle Common Framework for Networked Personal Health Information, which was endorsed by a broad range of stakeholders, in developing recommendations to safeguard PHRs. June 09, 2009
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