Wednesday, December 19, 2012
HIPAA privacy protections, whatever their adequacy, apply only to a set of "covered entities," largely within the realm of health care treatment and payment for it. The vast realms of public health data, health information entered into individually-maintained personal health records, health information shared in social networking sites or web searches, to take some of the more important examples, are outside of the protections of HIPAA, although in some cases they are at least protected by the Federal Trade Commission's prohibition of unfair or deceptive trade practices.
The National Committee on Vital and Health Statistics (on which I should disclose that I serve) is the federal advisory committee to the Secretary of HHS on health data. NCVHS has directed considerable efforts to developing privacy protections for health information outside of the scope of HIPAA. For example, NCVHS issued a letter on protecting the privacy and security of information in personal health records in 2009.
Over the last year, NCVHS has been studying the ways that health information may be used to promote community health. While these initiatives are admirable and present important opportunities for improvement, they also pose risks to individuals and communities if data are misused. NCVHS has just issued its initial recommendations with respect to data stewardship when health information is used to promote community health. The recommendations are in the form of a letter to the Secretary of HHS, outlining a stewardship framework for community health data uses. This letter is a critical first step in understanding the importance of shared data protection practices, including communication with communities, specification of the purposes of data use, and attention to risks posed by integration of data sets. NCVHS is planning much further work in the area, and I would welcome readers' thoughts about the letter.
In the December 3 issue of Modern Healthcare, a reporter interviewed a number of the members of the new Congress who are also physicians. They were all asked what they thought were the most important health care priorities remaining after the Affordable Care Act. Many of the answers were shocking to me in that they were completely focused on preserving physician incomes, totally ignoring issues that were more broadly applicable to the American public or improving health care in this country. The vast majority of the physician-legislators cited things like allowing physicians to balance-bill patients, decreasing antitrust oversight of physicians, enacting tort reform so that doctors can't be sued easily, and fixing the Medicare sustainable growth rate so that there are no cuts to physician reimbursement every year. With a few exceptions,they failed to cite issues that might actually improve the quality and availability of health care in this country, like increasing the number of slots in medical schools to address the upcoming shortage of doctors, studying treatments to determine what really works and what is costly but does not work, or reducing medical errors and improving hospital safety.
Although I'm not sure why I should be surprised at this unyieldingly self-serving focus in Congress, it really made me fear for the future of American health care. If the people who have the best professional backgrounds, credibility, and the positions to effect real change in our health care system are more interested in protecting the incomes of their cronies, what will really happen? How very sad for us, and what a sad statement about the ethics that are taught in medical school or are acquired through political activity. Bah Humbug!
Cross-Posted on Healthy Interests