Patients Take Center Stage
EDITOR’S NOTE: HIMSS recently invited members of the health IT blog community to share their responses to the question, “How will health IT make a difference a year from now at the next National Health IT Week?” (HIMSS will launch its inaugural #NHITWeek Blog Carnival Sept. 10 in support the seventh annual National Health IT Week).
We asked Rich Elmore, former ONC Query Health coordinator, now Allscripts Vice President of Strategic Initiatives, to do the honors.
When we look back one year from now, we’re going to find that the patient has truly taken center stage in our healthcare system, largely due to the impact of Health IT on the culture and practice of medicine.
You know there’s a massive culture shift underway when:
- Patients take pictures of their infections with their phone and send them via SMS to their doctor. Regardless of the policy problems with this, you do it because you need help NOW. And you hope you get the phone number right to avoid a really embarrassing moment!
- Patient frustration is heightened by healthcare organizations requiring communication by snail mail or fax. Really? In 2012?? As Allscripts CEO Glen Tullman asked when the Direct Project was launched (while holding up his iPhone): “when was the last time you asked your kids to send you a fax?”
- Patients expect to collaborate in their care, use many electronic means to engage, and expect their clinicians to effectively use their Electronic Health Records through care transitions.
- The head of the Office of Civil Rights gets up in an ONC convened presentation and says “you absolutely have a right to request your health record.” This emboldens the patient to seek the information they need to be an engaged participant in their care. It’s no longer just “the doctor’s information.” It’s also the patient’s information.
Last October, I had the great fortune to speak (warning: PPT download) at ONC‘s Annual Meeting alongside Laura Adams, president of the Rhode Island Quality Institute. Laura was in D.C. on the business day before her surgery for breast cancer. She was in D.C. to publicly describe the many challenges that she faced due solely to limitations of Health IT. She described how she dropped her imaging CD-ROM in her driveway and almost ran over it with her car. And she recounted many other unimaginable moments that could have been solved with better Health IT and health information exchange.
All she really wanted was to take care of her breast cancer. She wanted the system to just work so she could focus on her own care. She wanted to better understand her disease and how it affected other patients like her. But there she was in D.C. making the case for a better system for everyone else. Her passion gripped everyone in the room – – it was so impactful and so immediate, so urgent and so real. Laura is so brave, so ready to stand up for what really matters. In that one instant, everyone in the room felt in a new way why what they do in Health IT MATTERS.
Then two months ago, this became much more personal, as the light of my life came down with breast cancer. We’ve been going through many of the same systemic challenges that Laura experienced. And we have the same desire for a system that’s more effective, high quality, transparent and enabled through Health IT. And like Laura, my wife has been brave, thoughtful, engaged and passionate in the face of these challenges. She’s truly inspiring.
We are working with some of the most amazing dedicated clinicians. But they’re limited by the tools they have to collaborate. They’re limited by existing clinical knowledge. They’ve been limited by the small number of patients enrolled in clinical trials and the slow progress of those trials. If we had the data, the experience of millions of patients, might we know more? We have found ourselves in uncharted territory – the evidence just isn’t there for many questions about treatment options and outcomes for just this one beloved patient and this one disease.
We’re already better off for the ability to use EHRs to safely manage our care in this messy, fragmented health system. And we’re much better off for the insights and clinical evidence that have already been established.
But as patients we know that it can be much, much better. We want more and we want it now. Better quality. Faster. More collaborative. More coordinated. Better insights. More transparent. More responsive. And we want it when we’re sick, not in the distant future. Better yet, before we’re sick.
So that’s what it’s all about. Health IT is so important. Fortunately, it is opening a door to a cultural revolution that engages the patient more fully in their own care, leading to better outcomes. This coming year, for the first time, we will find the patient truly coming into the center of his/her care.
It’s about time.
EDITOR’S NOTE: Be sure to listen to Rich Elmore being interviewed by Healthcare Informatics in this podcast on population health.