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.
Report examines Privacy Implications of Data.Gov - CDT today released a Policy Post discussing privacy implications for the federal data clearinghouse known as data.gov and de-identification considerations for the Open Government Directive. While this initiative signifies a step in the right direction towards a more open and transparent federal government, it must be done in concert with protecting the privacy of individuals. The Policy Post recommends specialized review procedures for each data set on data.gov. In addition, it says that different levels of data protections should be implemented in different contexts and that de-identification guidelines should be adaptable over time. This is essential in addressing consumer privacy risks associated with handling large data sets, as is the case with data.gov. July 13, 2009
Share this articleCDT'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
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