Since the death of her husband from kidney cancer in 2009, Regina Holliday has focused her energies through art, public speaking and social media on benefits of health IT and participatory medicine. Her projects include the Walking Gallery, in which participants wear their stories in mini-murals painted on the back of jackets.
National Coordinator forHealth IT Karen DeSalvo recently kicked off National Health IT Week by wearing her personal history--which included growing up at times in poverty and receiving free lunches at school--on a jacket Holliday painted.
In 2013, our readers named Holliday among the most influential women in health IT.
FierceHealthIT caught up with Holliday last week at Idea Festival in Louisville, Kentucky--a diverse series of talks on the future of the arts, business, technology, design and other topics--while she was painting yet another jacket.
FierceHealthIT: Can you recap your speech here at Idea Fest?
Holliday: I didn't go in depth with the story about my husband's death--that wasn't my audience [high school students]. I talked about growing up as a [learning disabled] kid--I have dyslexia--and being beaten by my father growing up. Now I'm an international advocate for patient rights. I told them, "Don't let that keep you from being what you were meant to be. You can overcome that. You can be something amazing. Go be what you were meant to be."
This is a different audience that I usually speak to. I usually speak to healthcare audiences. I went to a private event last night where they gave me one minute at the microphone. I thought, "What can I do in one minute?" But if we can change minds regionally, they will know they can make a difference.
FHIT: You're focused on patients' access to their own medical records. Many healthcare organizations are struggling to get patients involved through portals. Will portals be enough to get patients involved in their own records? My husband came home from the doctor with a brochure about a portal, but he's never logged on to it.
Holliday: He may not be at a point in his life where that information is that important to him. But you want to have access to that information before there is a crisis. You don't want to build that system up in a moment of need. [Y]ou want to be able to see the long tail of care, to be able to look for patterns.
A baseline is what you have to have. Some organizations are offering Open Notes, the doctors' actual notes about their care, which are rich with information. A baseline can be gold.
And then there's what people post on Facebook. After my husband died, I went back through six months of his posts on Facebook, and he had mentioned five of the seven signs of kidney cancer in his status line? Can you imagine if we could mine that? If we could have all the genomic, social behavior and digital record all together?
It's especially important for patients to have portal access while they're hospitalized, so they and their families can know what's happening. When my husband was hospitalized, we couldn't get access to his records. They assume the doctor is telling you everything, but he's not. He has two minutes with you.
FHIT: Do you see progress?
Holliday: Yes, we fought to get patient access to their records included in Meaningful Use Stage 1. The health information exchanges, though, primarily are exchanging discharge summaries after patients are hospitalized. We've been pushing for Blue Button, where patients have access to their entire records. We've said, "If you can't make the exchanges work, then at least give us Blue Button."
FHIT: What about interoperability? Do you see progress there?
Holliday: It's very frustrating. It's getting better, but it's not where it needs to be. After I [gave federal testimony], Cerner invited me to speak at its conference. I've spoken three times at Cerner events, one time to all its developers. But I've been very frustrated with Epic. As far as I know, Epic has never invited a patient advocate--and there are a lot of us--to speak at its events.
We just want to tell them how dreadful it is to make people hurt like this, when they're hurting so anyway. If we can touch their soul, we can change things.
Editor's Note: This interview has been condensed for clarity and content.