Jodi G. Daniel J.D., Director of Policy and Research, HHS Office of the National Coordinator, opened the Alliance for Health Reform panel discussion held February 29th on Capitol Hill. She pointed out that a nationwide approach to dealing with privacy issues is possible. ONC recognizes that privacy protections need to exist at a state and federal level, but it is also very important to have policy mechanisms that can adapt with technology changes along with involved stakeholders.
Deborah Peel, a practicing physician and a national expert on health privacy founded the organization Patient Privacy Rights to help restore the individual’s right to decide on who can have access to health information. According to Dr. Peel, Americans want to control who can see and use their information. To make that point, an IOM Survey on Privacy conducted in October 2007, found that 99% of the public want to be able to give their consent if researchers want to use their personal medical and health information.
She continued say that in today’s world, personal health information is for sale along with Medicare and Medicaid data. One of the areas least protected information concerns prescriptions. As an example, Nex2 was sold to United Healthcare and built the largest near real time drug history database in the world. Releasing this information is HIPAA compliant because the insurance company always has the release signed by the individual applicant.
Dr Peel pointed out the need to use smart technology to protect privacy. In addition, smart certification could be given by a consumer-led organization offering a Good Housekeeping Privacy Seal of Approval for HIT systems and products.
According to John Rother, Director, Policy & Strategy, AARP, there are three positions being debated that deal with privacy. Some people insist that Congress must enact strong protections, however, the passage of legislation on health IT has been delayed in Congress due to privacy issues. Others say that opening HIPAA/codifying new protections would disrupt market forces that ensure that vendors protect privacy. Still others want new rules, but they favor breaking the gridlock by using a regulatory approach.
Rother explained that it is essential to break the gridlock because privacy is absolutely essential in order for patients to have confidence in HIT. We must have privacy rules that consumers can trust and individuals should not have to choose between privacy and using health technologies.