[See also: New patient engagement chief at ONC.]

 

And those consumers? Their engagement just might be one of the most integral parts of the healthcare equation, a theme that DeSalvo hit home and one that manifested itself in virtually every conversation during ONC's 2014 Annual Consumer IT Summit.

 

"This is about health information beyond electronic health records," DeSalvo added. "It's not just a good idea; it really matters for people's health."

 

Take, for instance, the story of Emily Kramer-Golinkoff, 29, diagnosed with an aggressive form of cystic fibrosis, who was among those to take the stage. 

 

People living with CF, a progressive and fatal genetic disease, have an average life expectancy of 41 years. And that number, as Kramer-Golinkoff pointed out, is skewed upward due to many people living with less serious forms of the disease. 

 

Kramer-Golinkoff, who lives with a rare mutation of CF and currently has only 37 percent lung function, has to do three hours of breathing treatments and take more than 30 pills daily – and that's on a good day. On a not-so-good day, it means days or weeks in the hospital, so the terms "patient empowerment" and "patient engagement" aren't just some far-off concepts for her. They're real-life, every day necessities that have saved her life.  

 

"Patient empowerment is a living, breathing, evolving thing. It looks different for each of us, and it can change with time and by disease and severity," said Kramer-Golinkoff. "Patients are invariably the hub of our own healthcare, and our buy-in and partnership is essential to make the wheels spin. We're the generators of data," she added. "We're the ones who reap the benefits of effective treatments and bear the burden of ineffective ones. And we're the reporters on the front line who bring forth this information to the rest of the team."

 

And this reporting proves key. Kramer-Golinkoff recalled a life-threatening experience back in 2011 when she got a lung bleed. Most healthcare teams, as she pointed out, would have put her in the hospital and prescribed a course of IV antibiotics. After looking at her medical chart, "that's what a decision tree would have you do," she admitted. But Kramer-Golinkoff's care team listened to her and based their prescriptions on what she thought would work. Turns out, Kramer-Golinkoff was right. And because of it, she was able to avoid hospitalization and a course of IV antibiotics.  

 

"Living 29 years with CF has given me remarkable insight into what constitutes a red flag and when it's time to sound the alarm with the rest of the team," she said. "The other half of the coin is having a team that listens, believes in your system and trusts your judgment."