Farzad Mostashari, National Coordinator for Health Information Technology, kicked off this year’s National Health IT Week at a meeting Monday focused on the patient’s role in health IT.

In a meeting that brought together a host of federal officials and stakeholders, Mostashari asked: “Is the time now?”

“There’s a glorious band of misfits here today who saw the world of health and healthcare and said, `we don’t fit. We need to change what’s happening here,’” said Mostashari. “Is it time for this movement to move beyond us misfits to the broader world of health? Do we have new tools and approaches? Do we have the oxygen for those new tools and information and data that will be available? Will providers be supportive, will patients even know to ask or to care?”

[See also: Consumers get serious about their EMRs.]

Dave deBronkart, often called “e-patient Dave,” co–founder and board member for the Society for Participatory Medicine -- what he called “a rag-tag band of activists” -- argued that the largest yet the most neglected resource in the world is the patient.

“I’m talking about specific concrete ways that medicine is not optimized because it’s the only industry that does not start with what the consume -- the ultimate stakeholder -- values.”

“People perform better when they are informed better. It is perverse to keep people in the dark and then call them ignorant, but that’s what happens a lot.”

“How can patients change if they can’t see the information? This is what we’re here to change,” deBronkart said, naming Blue Button as the prime way to accomplish getting data into the hands of patients.

deBronkart also cited survey results on the use of OpenNotes -- an initiative (not a software program) that invites patients to review their visit notes written by their doctors, nurses, or other clinicians. The survey, conducted by the Robert Wood Johnson Foundation, showed 99 percent of patients who were shown their doctor’s unedited notes were interested in continuing the practice. This finding was in high contrast to the baseline attitudes survey, which showed only 30 percent of doctors thought patients would want to see the notes.

“Everybody involved said let’s move forward with this,” he said. The most significant finding, according to deBronkart was that 85 percent of patients said the availability of notes would influence their choice of providers.

“This means that healthcare is shifting to become a consumer-driven business,” deBronkart said.

Todd Park, chief technology officer for the United States praised the progress being made. “There has never been a better time to be an innovator in health and IT, and we need innovators of all kinds,” Park said. “Like many others, I’m a passionate advocate for the power of data to improve healthcare, and Blue Button simply enables consumers to participate directly in this movement.”

[See also: Why Todd Park wants to set data free.]