Last Wednesday, Flip the Clinic’s Whitney Bowman-Zatzkin took the stage at the White House Champions of Change event focused on the President’s Precision Medicine Initiative to share some wonderful news about Flip 55. Fifteen organizations had committed to helping patients get access to their electronic health records. That means Flip 55 has a potential reach 160 thousand clinicians and 20 million patients. It was a wonderful moment for Flip the Clinic, but just the start of some extraordinary things to come. We interviewed Whitney to find out what she learned from the inspiring people and organizations at the event and to hear about what happens after you go the White House.
The people and organizations at the event were hand picked by the White House. What did you see that made you feel hopeful?
Whitney Bowman-Zatzkin: I can’t think of a time when I’ve seen aerospace and pharma and all these other groups coming together to do the right thing for something—let alone something that’s a government initiative. It just really felt like patients and the health care community were coming together to push for what’s right.
Dr. Collins said in his speech that we can’t make any of this happen without people from different backgrounds. How will Flip 55 benefit from reaching out to diverse communities?
One of the things that’s really unique about the Flip 55 community is that it really has become this sort of sample population of what’s happening across the country right now. We have some groups that are very advanced with high viewing rates (above 80%) for patients accessing their electronic health record portal. We also have community practices coming on board that do not have an Electronic Health Record (EHR) system but recognize the value of connecting a patient and their family to their medical record data in a paper form while they work on their EHR. We have another group serving diverse populations in New Orleans. At the same time we have a system focused on youth behavioral health in Pennsylvania. We’re finding that when you can pull all of the strings together, you end up broadcasting out a louder song than even a great violin with just 4 strings. This Flip creates a really neat chance to be able to bring everybody in.
Where are we now with getting patient access to data?
Think about bone marrow donation. It used to be a very complicated and renowned as a fairly horrible process to experience, no matter how important and lifesaving. Now, with new advances and technologies, that’s largely changed. I think about groups like Be The Match. I know that when I signed up to be a marrow donor, the steps were transparent, simple, and easy to understand, while still clear in explaining it is a very significant act to donate. They swiftly addressed the fears a future donor may have when registering. Compared to where we were in the 80s, the clinical process is enhanced and the recruitment process is now quite different.
I feel like we’re in that moment now for precision medicine. We’re translating really complicated science into something beautifully simple for a person to contribute to, join, and follow. Finding the way that precision medicine matches with unique community groups—I think that’s where Flip The Clinic is going to be really helpful and that’s where more and more people are going to need to be a part of the conversation.
What do you see down the road?
No one will be blocked from accessing, sharing, downloading and using their health data anymore. My hope is that the regulations will be updated and they will continue to alleviate pinch points in the process. Every patient will be able to ask for their data and use it. The way we as patients use our health data will grow and expand. Amazing things can happen when patients get access to health data! Hopefully the promises of the future will inspire more patients to take action with their data file.
That’s one reason the President’s Precision Medicine Initiative has such importance – the evolution of a patient’s relationship with his or her health and health care data. It’s really easy to study six people and confirm that they’re sick. It’s really hard to study a bunch of healthy people and look through that data to make sure you’re not missing something important. I think we’re really in a neat spot today, as patients and clinicians. We’re going to be able to connect to whole towns. We’re going to be able to talk to groups like the one from New Orleans, where their partners are not just the health organizations but also the community and government officials while also connecting directly with EHR vendors. It’s like our relationship through this Flip with Epic—to invent the new opportunities as this initiative and other projects unfold.
Beyond the hard science of the Precision Medicine Initiative, sharing data creates a national call to act and contribute to science. A call to do your part to cure cancer, understand allergies, explore migraines, and identify rare disease markers—all without having to do much more than a few emails. I think there’s something awesome and cool—but again, I’m a huge nerd—about the fact that you get to be a piece of science, no matter who you are, no matter what you’ve encountered, no matter where you’ve lived. By agreeing to share data, anybody can contribute to science.
Let’s talk about answering Special Advisor to the President Brian Deese’s call to action. What happened?
He got on stage and said, now is the time for community action around the President’s Precision Medicine Initiative. He said, ‘we’re speaking to a couple of groups today that are making commitments, but the reality is, we need 20 more commitments to come forward out of the community to take on a different piece of this project.’
While I was sitting there in the room, it struck me that this was the opportunity inside of Flip the Clinic. Sure, we were there as one organization, but the reality is that inside our own Flips Community, we actually were pretty close through the 15 organizations that we were working with at that point in time. Not one of these organizations will be working with Flip the Clinic in the same way on this Flip. And every one of them is moving a mountain in the right direction for connecting patients to their record data and lab results.
And you picked up the challenge—on stage!
I did. I’m big NASA space geek. [Flip the Clinic can confirm that this is true.] To me, Brian was reaching for what those early conversations had to feel like for NASA and the goal of reaching the moon.
Because the Precision Medicine Initiative received its first big mention to the public inside of the President’s 2015 State of the Union Address, I saw this really awesome opportunity to connect Brian’s call to action to the “moonshot moment” of Kennedy’s call in 1961 to put a person on the moon.
On stage, I answered Brian’s call saying, ‘We’re here at Flip the Clinic, we’ve got our teams and organizations ready to go. We’ve been asked by the White House to have 20 different organizations and projects to come forward under the umbrella of this particular initiative, so let’s get on it.’ And then I gave the entire viewing audience my email address!
I believe that Flip the Clinic has a really significant role to play in the President’s Precision Medicine Initiative, and I believe we have only just started our journey on this with the Flip the Clinic community.
To find out what happened after Whitney took the stage, stay tuned for a full run down later this week.