Thursday, May 5, 2011
Guest Blogger Leslie Francis: An Update on the National Committee on Vital and Health Statistics (NCVHS)
In my last “guest” blog, I’m going to put in an unabashed push for a federal advisory committee on which I serve as co-chair of the Subcommittee on Privacy, Confidentiality and Security. The National Committee on Vital and Health Statistics (NCVHS) is one of the oldest federal advisory committees. It is the statutory advisory committee with responsibility for providing recommendations on health information policy and standards to the Secretary of the Department of Health and Human Services (HHS). The NCVHS website contains a wealth of information about data stewardship, data uses, and data protection. Over the years, NCVHS has steadfastly advocated for the responsible collection and protection of data needed for the improvement of public health and health care. Balancing the protection of individual privacy and confidentiality with the immense possibilities of health information is not easy, and NCVHS has made many important recommendations in this regard. In this post, I want to highlight two particularly important NCVHS initiatives.
First, NCVHS has led the way in understanding how to protect confidentiality in the development of health information exchanges. In 2006, NCVHS made a broad set of recommendations for safeguarding privacy in the context of a Nationwide Health Information Network. These recommendations included an opt-in for individual participation in health information exchange. They also included assessment of the feasibility of allowing special confidentiality filters for particularly sensitive types of health information, and the importance of developing contextual access controls to electronic health records and health information exchanges. In 2008, NCVHS recommended that interoperable electronic health records should be designed to allow separate management of sensitive categories of health information. In 2010, NCVHS recommended definitions for certain sensitive categories of information as outlined in federal and state law. These categories include reproductive history, sexually transmitted disease information, genetic information, substance abuse treatment information, and mental health information. In considering these recommendations, it is important to remember that NCVHS is not suggesting that this information should not be available at all. Rather, NCVHS is observing that the law requires separate handling of certain types of health information and, as well, that patients may wish certain types of information to be given special handling. Without design capabilities for separate handling of mental health information, reproductive information, or sexually transmitted disease information, for example, capabilities for adolescents and their parents to each have access to health records through patient portals may go unrealized.
Second, NCVHS has recently been exploring how to protect confidentiality as interoperable health information is increasingly proving useful for public health purposes. In February, 2011, NCVHS held a working session on community uses of health information. At that session, the Committee heard remarkable examples of uses of local data to improve community health. Many of these uses involve de-identified data or types of data (such as air quality measurements) that do not involve individuals at all, but others involve information that is individually identifiable or that applies to very small geographic areas (such as block or census tract). The benefits of this data are potentially enormous, but at the same time it is critical to ensure that individual confidentiality is protected and that community trust in not jeopardized. On May 12, NCVHS will be holding a second working session, on models for protecting confidentiality and legitimizing trust. This is very much a “scoping out” enterprise: given all the power of interoperable data for public health, what are best practices for protecting confidentiality? To listen in, or follow up, go to this link. If any readers of this blog are interested in following up with me on these or other issues about the security, privacy, and confidentiality of health information, I’d love to hear from you. I can best be reached at firstname.lastname@example.org
Best, Leslie Francis