Though the goal was simply to “wordsmith” its “Health IT Strategic Framework: Strategic Themes, Principles, Objectives, and Strategies,” report, the HIT Policy Committee’s Strategic Planning Workgroup spent much of its meeting this week engaged in a fundamental debate on how best to balance privacy concerns with the need for an open, “learning” healthcare system.
“I don’t see why we shouldn’t also have as part of our strategy the premise of not presenting barriers to citizens who are interested in sharing their information and willing to take that risk,” said Don Detmer, retired president and CEO of the American Medical Informatics Association. “We should not force privacy to be more important than health.”
Detmer noted that since people have the right to donate blood and organs — but are not forced to do so — they should also have the right to share their health information, and even elect to receive a unique patient identifier. Jodi Daniel, director of the Office of Policy and Research at The Office of the National Coordinator for Health Information Technology, commented that while the government could not take up such a charge, as it’s prohibited by an act of Congress, there was nothing preventing entities in the private sector from doing so.
Detmer went on to stress that any regulations put in place by the government should make it easy for citizens to do the “altruistic” thing — to share their health information for use in research or clinical trials. “Upwards of 90 percent see these types of things as social goods.”
Patricia Brennan, chair of the College of Engineering Department at the University of Wisconsin, agreed that the document was tilting toward the privacy side. “Right now, it seems very restrictive to privacy and security as it relates to data exchange.” She went on to discuss how privacy should not interfere with “new knowledge development.”
Dave McCallie, vice president for medical informatics with Cerner Corporation, came at the issue from a different angle, saying the group had done its job by “preventing harm rather than mandating the good.” The focus, he said, should be on giving people choices.
Despite such assurance, Detmer wanted changes to the document which addressed his concerns. “There are some areas where current policy is really not helping us right now,” he added.
Steve Stack, M.D., an emergency physician and member of the American Medical Association Board of Trustees, said a presentation he had recently seen by Dan Ariely gave him a new perspective on the group’s work. “If we really want to advance a learning health system and make information a resource to the betterment of both individuals and society as a whole, to advance and foster those things, then preserving our rights, liberties and freedoms is essential,” said Stack. “But how ONC executes on this will make a profound difference because of the way the human mind works and how we make choices. (That will determine) whether this takes off and facilitates care or becomes just an irritation. We don’t want to scratch our heads five to 10 years down the road and say, ‘Gee, we wrote great document, why didn’t anything good come of it?’”