Put the CIOs in charge, patient advocate says

Chief information officers aren't running their healthcare organizations, but maybe they should.

So says Jamie Heywood, chairman and co-founder of the online healthcare social network site PatientsLikeMe and founder and former CEO of the ALS Therapy Development Institute, a Cambridge, Mass.-based not-for-profit biotechnology research organization.

“I think what I'm kind of saying—dangerously—you're kind of more qualified to run your hospitals than anyone with an M.D., because you understand information,” Heywood told an audience of hospital CIOs and other health IT professionals as the closing keynote speaker Friday at the College of Healthcare Information Management Executives' 2013 Fall CIO Forum.

Before anyone accuses Heywood of sucking up to his audience, his suggestion came after a long and blistering critique of the healthcare industry, one that he said is in desperate need of a top-to-bottom overhaul, with technology enabling change.

CIOs, though, are at least better equipped for what needs to be done.

“The Encyclopedia Britannica is dead,” Heywood said. “The Yellow Pages are dead. You're living in the world of real-time data,” a world that promises to deliver “transformative” changes in human health and wellness.

Heywood launched PatientsLikeMe in response to the healthcare delivery system he and his brother Stephen experienced while the latter battled ALS, or Lou Gehrig's disease, for seven years before succumbing in 2006. It is a system that saved Stephen's life and then nearly snuffed it out by a mistake within a span of hours, Heywood said.

He cited the totemic Institute of Medicine report released in 1999, which famously revealed that as many as 98,000 U.S. patients die each year due to preventable medical errors, at the time the sixth-leading cause of death. He followed, citing a study published last month in the Journal of Patient Safety, with a new estimate of 210,000 preventable deaths, pushing errors up to the third-leading cause of death in America.

So, what to do?

Heywood's prescription: Radically overhaul and improve the networks that providers use to gather, analyze and share data and integrate clinical and research systems with individuals' personal health technology.

“We should measure each condition to support the patients first, the clinicians second and the researchers third,” Heywood said. “Every patient should be measured as part of their care to the degree that is appropriate.” That would include many wellness measures—such as mobility, sleeplessness and personal sense of well-being—that are created by individuals about themselves, but gathered by few, if any, healthcare delivery organizations today. That must change, he said.

“You can put the burden on the patient,” he said. “They'll do this for you. You just have to set it up.”

Follow Joseph Conn on Twitter: @MHJConn

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