Group seeks to balance privacy concerns with a healthcare system that facilitates and enhances care.
The HIT Policy Committee's Strategic Planning Workgroup spent much of its meeting this week debating how best to balance privacy concerns with the need for an open, "learning" healthcare system.
The group shouldn't put barriers in the way of people "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."
Just as people have the right to donate blood and organs but aren't forced to do so, Detmer said, 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 IT (ONC), commented that while the government can't take up such a charge, there's nothing preventing private sector entities from doing so.
Detmer went on to stress that any regulations the government enacts should make it easy for citizens to do the "altruistic" thing--to share their health information for use in research and clinical trials.
Patricia Brennan, chair of the College of Engineering Department at the University of Wisconsin, said the report the group was working on--the "Health IT Strategic Framework: Strategic Themes, Principles, Objectives, and Strategies" report--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 shouldn't interfere with "new knowledge development."
Dave McCallie, VP for medical informatics at Cerner, a healthcare IT vendor, 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 said.
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 the group really wants to advance "a learning health system" and make information a resource to improve the health of both individuals and society, 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," he said. 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 a great document, why didn't anything good come of it?' " Stack said.