Lee Stevens, Director State Health Information Exchange Policy, HHS Office of the National Coordinator for HIT
View the Health IT Buzz HHS/ONC blog post
MSFT: - Lee, tell us about the project at Children’s Medical Center Dallas?
Lee: - A couple of years ago we were looking for a hospital doing true data liberation – giving patients access to their health information completely untethered from the hospital. We really couldn’t find an example but in our search we met Pamela Arora and Katherine Lusk at CMCD. They understood the benefit of making information available to their patients and jumped in with both feet. Pamela and Katherine identified an initial population (children living with sickle cell disease), made the connection with Microsoft HealthVault and Verizon, and never looked back.
There were three key elements that are making this project a success:
The tireless commitment of Pamela and Katherine and the CMCD leadership.
The time and resources Microsoft HealthVault
was willing to commit to see patient improvement.
The generosity and understanding of Verizon in meeting the needs of Texas children suffering from chronic conditions.
Today, the caregivers for these children – usually their parents – can access their records wherever they are and as our video interview shows, it is making a difference because they can share their children’s health information with any provider at any time.
MSFT: - How did the pilot come about?
Lee: - We had one initial goal as the Blue Button Initiative was starting, and that was seeing true patient health data liberation happen. We knew that we wanted to focus on chronic conditions and understand how the patients could benefit. We were interested in consumer interest, proficiency, and long-term use of personal health records (PHR). We are still learning but CMCD is fully convinced and expanding the initial pilot to populations beyond sickle cell disease.
MSFT: - ONC is ten years old this year, and we’re well into the rollout of HITECH and ACA, can you comment on how far we’ve come on Health IT, as demonstrated by this pilot?
Lee: - This pilot has helped ONC in many ways. First, we now know that achieving the promise of health IT is possible. After years of theorizing we can now see electronic health data liberation in action. After many years of planning and development, we knew the technical capability was there both on the hospital side and the PHR side. But from the legal and governance side of data management, questions remained. To date, that remains one of the toughest challenges. We’ve always envisioned that enabling the technology would allow the private market to help improve health care and coordination. We are only on the precipice of what that truly means. How far families and patients are willing to go in engagement remains to be seen…we now have this pilot as a reference point.
MSFT: - Tell us more about the technology that enables this?
Lee: - The technology behind a pilot like this is multi-pronged. While ONC has a mission to increase the utilization of electronic records for health improvement, the technology that enables this to happen is outside government in the EHRs, like EPIC in the Children’s instance, PHRs, like HealthVault, and Internet enabled SmartPhones.
However, Blue Button is a rare example of government enabled technology. It was developed by the Department of Veteran’s Affairs to improve the care of the country’s veterans. But it is an incredibly powerful tool that helps ONC achieve its mission – when the market adopts the technology and untethers patient data. ONC is able to encourage and expedite this process by placing specific use requirements on market players that receive incentives under the Meaningful Use Program. We are a now at a point where we can say, if a patient asks for their data electronically, you must provide it to them.
MSFT: - How is a secure SmartPhone a game changer in this scenario?
Lee: - The SmartPhone cannot be underestimated in its power. Unknown ten years ago, the device is an amazing handheld computer that just so happens to make phone calls. Accessing your health data with a familiar device that most people have with them 24 hours a day is the game changer. Imagine how different the human toll of Hurricane Katrina would have been if everyone had a SmartPhone and a personal health record they could access through the Internet. The suffering due to lost medical records just wouldn’t have been an issue. The care given in the Super Dome would have been practically equivalent to arriving in an emergency room.
MSFT: - Where do you see this going in the future?
Lee: - I love to tell the story of how I first became a user of a PHR – and the extraordinary value I immediately found. My veterinarian actually enabled a PHR. I decided to sign up and use it. When my dog was attacked late on a Saturday night I had to take her to an emergency animal hospital where she had never been treated. Because the District of Columbia animal control was notified because of the severity of the attack, I was able to prove on the spot she was up to date on all her vaccines, and share her full medical history and the drugs she was currently taking. In an emergency it saved my dog from a weekend quarantine, which is typical until you produce the dog’s medical record. In the future I hope every American recognizes this value in a PHR. And with a strong market the new tools and innovations that can happen are unlimited.