Kathleen Sebelius: Patient engagement may be biggest element to change healthcare delivery systems

WASHINGTON--It's finally the time of the consumer in healthcare, and the industry must listen to patients' voices, former Secretary of Health and Human Services Kathleen Sebelius said in a fireside chat with HHS Acting Assistant Secretary for Health Karen DeSalvo.

The two took the stage at the end of Day 1 of the Office of the National Coordinator for Health IT's annual meeting, offering insight into the healthcare industry's past, present and future.

Sebelius, HHS head from 2009-2014, told the crowd the industry is finally listening to the consumer voice and it will be a real breakthrough for healthcare.

"That may be one of the biggest elements to change delivery systems that we have," she said, such as patients getting access to more health information and using that information and transparency within the industry to ask more questions and voice their concerns.

"I think we're about to see some pretty dramatic shifts based on what families and patients and people want of the system that they've really never had an opportunity to voice."

DeSalvo, who also serves as the National Coordinator for Health IT, and Sebelius also spoke about the importance of open data for research.

DeSalvo said that she feels "scientists are quite hungry for the data … and I have an image in my head that there's this locked door and the data's behind it and on the other side are the consumers and doctors and scientists."

In the past, when people thought about HHS, Sebelius said, there used to be incredible amounts of health data that was "expensive, opaque, unavailable and unattainable."

One major accomplishment made in that area, created by Todd Park, former chief technology officer at HHS, was to bring people out together to discuss data and freeing information--that effort was Health Datapalooza, which held its seventh annual event this spring, Sebelius said.

"It's about the notion that if you push data out the door and have it free and available … then innovation and imagination would take over," she said.

As for what lies ahead for HHS and health IT, Sebelius said interoperability is a huge goal and lauded the serious conversations going on about it today. 

In addition, she said, there's no question that cybersecurity and hacking are troublesome challenges. However, she added that she doesn't think "it's worse than when data was on paper files."

"The possibility that people's private health information could be exposed has always been terrifying to most consumers," she said.

Last, the industry must work to address the resistance that remains toward electronic health records, Sebelius said.

"It is the most expensive and most time consuming investment that any provider will ever make, no question about it," she said. "But it also has the biggest potential to yield the best results. So I think just continuing to push against that resistance is part of the puzzle going forward."