What’s The Fix? Creating a Movement from People’s Health Care Stories

May 2, 2018

Photo caption: Bryce Olson, speaker at What's The Fix?, Leslie Constans, Cambia host and Burt Rosen, founder of What's the Fix

#WTFix | whatsthefix.info

Humanizing health care is a movement that is being fueled from the bottom up. Everyone has health care stories of their own personal ‘WTF’ moments. There’s no shortage of frustration, especially for patients. Burt Rosen, the founder of What's The Fix? conference and chief marketing officer at HealthSparq wanted to provide a platform to listen, to real people, who’ve overcome amazing obstacles and have done it despite the system, not because of it.

Believing in the power of stories, What's The Fix? seeks to influence the health care industry to operate in a way that is person-focused. Stories like that of Bryce Olson, who learned to fight his cancer more effectively by demanding genetic sequencing and precision medicine treatments to fight his cancer in a more targeted way.

In this episode of HealthChangers, we speak with Burt and Bryce who will share their passion behind this cultural shift and how they’re leveraging the inspiring stories of people who were left with no options and had to create their own solutions to transform their health care experiences and those of others.

Leslie Constans: Welcome to the HealthChangers Podcast, presented by Cambia Health Solutions, where we share real stories of health care transformation from those experiencing it and those helping to make health care more personalized. I'm your host Leslie. Everyone has a health care story. Maybe about their own medical journey or that of a friend or loved one. These stories and the people behind them could be powerful forces for change in a health care system in need of improvement. My guests on the podcast today are part of a movement called What's The Fix? that spotlights the stories of individuals who are taking health care into their own hands.

Our two guests today are Burt Rosen and Bryce Olson. Burt is the founder of What's The Fix? and chief marketing officer at HealthSparq. Bryce is a global marketing director at Intel who has his own story to share. He'll be one of the guest speakers at the What's The Fix? 2018 Conference that's getting underway May 17th in Austin, Texas. Thank you both for joining me today on HealthChangers.

Bryce Olson: Thank you.

Burt Rosen: Thank you.

LC: Burt, this will be your second year of What's The Fix? What can you tell us about the journey since the first year?

BR: Sure. The first year for context, we had never done this before. We were just taking a complete risk. We were trying something new. We didn't know if anybody would care. We found that we hit a nerve and that people really wanted to hear people’s stories. They didn't want to hear the industry talk to itself anymore. We had 650 people register and that led us to obviously surveying everybody say, "Should we do it again," and almost everybody we asked said, "Yes, do it again." That's how we decided. There are a lot of things that are different because we always want to keep learning and because I don't want to be an annual conference. Like that's not the aspiration.

The aspiration is to change health care and start a movement that gets people talking and less than talking, more listening to people who have great stories. We're streaming online again and we're putting a lot of effort into that. We have a host for the online event. A woman named Wheezy Nurse who's a nurse and she's amazing. Tons of energy and very human.

LC: What's her handle on Twitter?

BR: Wheezy Nurse. @WheezyNurse.

LC: Great.

BR: The reason why we did What's The Fix? is because my belief is that health care has to be changed from the top down and from the bottom up. Top down is the legislative changes, the corporate changes, but bottom up is where I'm more interested, which is really the organic changes. My theories are if we can change the conversation that one doctor or one med student ultimately has with a patient, we can start to change health care.

Genetic Sequencing is empowering cancer patients with options

“I said, "Sequence me." That's what really changed my life...”

LC: Great introduction. Bryce, so today you're wearing a shirt that says, "Sequence Me," and I heard that when you speak about your health care experience and tell your story, you wear this t-shirt. What does it mean?

BO: It's a rallying cry for anybody who is suffering from disease, who is running out of options, now they’ll have one new door open to them. It's the way I look at it. That's what happened with me. I was advanced, aggressive metastatic prostate cancer. I got diagnosed in March of 2014. I went through the standard of care, and I ran out of options. It's amazing as a cancer patient really how very few standard of care things are FDA approved for you and you can exhaust those very quickly. When that happens, it's very sad and frustrating because, really? There's nothing else? There must be more.

When I was coming off a leave, I was on leave at Intel Corporation and going through chemo, which is incredibly toxic, I got probably nine months out of it, but I paid for it with six months of chemo-induced sickness. Everything from epic fatigue to blistering mouth sores to neuropathy in my feet. I still really can't feel my feet. I came back to work and I wanted my last days to matter. I came to term with my own mortality. I didn't think I was going to make it, didn't think I'd see my kid get out of elementary school. I wanted my last days to matter.

I knew that Intel had a group that was using its technology to help health care do digital transformations, but I didn't know much about it, but I still wanted in to that group. I pushed my way in. I got in, but what I learned blew my mind because that's when I started to learn about genomics and precision medicine and how there's technology and science that have come together that can look inside the DNA of somebody's disease and understand what fuels it. This can open a door to a new way to fight it. I had no idea. Once I learned about that and all the companies that Intel was working with in the health care space to do just that, I demanded it for myself.

I said, "Sequence me." That's what really changed my life because we identified clinically significant mutations that were driving my cancer and that opened the door for me to use a targeted and less toxic drug that was in early development. Right there: when I was running out of options, suddenly, a whole new door of options opened and it worked. I could shut it down for two years. Now every time I get a recurrence, I just go and profile it; do the “sequence me”. Get it profiled again and then I understand what's fueling it. Then I go and try to find something targeted to shut it down.

Precision cancer model opens door to personalized treatment and hope

“It doesn't always work that way, but it still opens a new door and that opens new hope for people.”

LC: Wow. That's amazing. I really like the analogy of opening the door. Obviously, you're probably going to share your story at What's The Fix? Besides telling your own story, what other doors could open for people who are advocating for themselves or for others?

BO: Yeah, absolutely. Well, and that's the thing. I think my story resonates with a lot of people because everybody knows somebody with cancer. A lot of people when they get stage 4 metastatic disease, they run out of options. When you run out of options, then what? Is it just palliative care? Is that all that's left is just to kind of make us feel comfortable as much as possible as our dying days? No. I think my bigger message and the reason why I resonate is it's a message of hope. I think it gives people hope. Now if you go in and say, "Sequence me," and get your tumor profiled, you will absolutely understand what's fueling it.

That doesn't mean that you're absolutely going to get a treatment that will work.

LC: Yeah. I was going to ask about that.

BO: It doesn't always work that way, but it's still opens a new door and that opens new hope for people. Anytime you can open and give more options that people can choose from, it's always a good thing. It's always very powerful. Right now, I have a recurrence and I'm doing the same thing. I'm having it profiled and we're look at the drivers of what's fueling my disease, and that is giving us all kinds of different options that we can choose from. That's exciting. It makes me feel like there is a pipeline of stuff that I can depend on. That's what I've been told.

Like other people have just said, "Wow. My head was down. I didn't think I was going to make this. You've given me new hope with your story."

Asking to be sequenced may improve overall outcomes for some cancer patients

“Once you know what fuels it… you're watching for innovation in that space... If you don't know what's fueling your disease, you're wasting time and money.”

LC: What advice can you give to people? You work in technology. This is something your company is doing, but what can other people who are facing similar challenges, how can they go to their provider and say, "Sequence me."

BO: Yeah. I mean it's really that simple honestly.

LC: Really?

BO: I think so, especially with cancer, but again I think it's any disease. All disease can truly be diagnosed well by DNA. Rare diseases that kids have, little kids in the NICU that are struggling and their parents are on a diagnostic odyssey where they're going from specialist to specialist over seven years and spending hundreds of thousands of dollars and they don't have an answer. Well, guess what? The answer is there. You just have to do whole exome sequencing or whole genome sequencing. You're going to at very least find out what's fueling the disease.

There may not be a treatment for it, but once you know what fuels it, then your eyes are open and you're watching for innovation in that space that you can go after. Even a legislative level CMS (U.S. Centers for Medicare & Medicaid Services) recently approved Medicine's FoundationOne test. That's the gene profile test. It looks at 320 something genes that are screwed up in cancer, and it also has some signature stuff that can help you understand whether you'd be a good match for immunotherapy or not. The FDA approved that late last year and then CMS, Medicare, approved covering it.

Reimbursement's been an issue on some of these things where to get the answer, you have to do the molecular diagnostic and payers haven't covered the molecular diagnostic, but now CMS covers it. That's putting pressure on commercial payers to cover it as well. It's kind of like an ounce of diagnostics can address a pound of treatment or something. It's just like invest a little bit upfront to understand what's fueling the disease and then that can get you onto something that would be more targeted, less toxic, probably more effective. It just seems like common sense. Why not?

LC: What's inspired you to share your story?

BO: The fact that it worked. Once I understood like wow, you can really understand what's fueling disease in the DNA because we now have technology and science that have come together to sift through all that and to understand that, that seems very logical. That everyone is unique. We're not the same. A lot of treatments today is still one size fits all. Everybody gets the same thing, yet all of us are different. I might have prostate cancer, but what's fueling my prostate cancer is different. It's not one disease. It's many diseases because there are FDA approved drugs for first line and even second line.

If you don't know what's fueling your disease, you're wasting time and money. The fact that it worked for me, I mean I felt compelled. I was almost like morally obligated to help other people understand what I did so that they can try to do the same thing.

LC: Right.

BO: It's going to be the way we care for people in the future. Cancer, diagnosing it based on anatomical location of where it started from, that's an old way of looking at it. In the future, it's going to be what's driving it at a molecular level and then how do we stop it. Because the trials that I've been on, they're not prostate cancer trials. They are trials for a drug that's going after this mutation regardless of where the cancer is.

LC: That's interesting.

BO: Yeah. The drugs that are coming out are meant to stop something that is mutated in cancer. They open the door to anybody who can show that they've got those mutations. It's a way we need to treat people.

LC: Burt, Bryce is one of how many speakers at What's The Fix? who are going to be sharing stories like this?

BR: About eight sessions. Probably 13 to 14 speakers in total.

What’s The Fix? movement started from bottom up, now draws big partners for health care transformation

“The event is bringing people with stories that have been kicked out a lot of health care because there hasn't been a solution for them.”

LC: You said earlier that you don't want this just to be an event. It's more about it being a movement. How are you finding and connecting these incredible people out there?

BR: That's a great question. Some you read about. Some you meet through your network. One of the things in health care is everybody has a health care story. You can't find a person who doesn't have a health care story, whether it's about them, a parent, a sibling, a grandparent, whatever it is, right? As soon as you start talking to people and say you're trying to do this, you just start getting flooded with names. Year one was harder because nobody knew what we were doing.

As we went into this year, we had people who would come to us and say, "Oh my gosh. You need to go talk to this guy. His story is amazing or she's unbelievable. You have to get her to speak." We would start talking to a lot of people like that.

LC: You talked about how change comes from the top and the bottom. What's The Fix? is a movement that's coming from the bottom up, this groundswell of people who are taking control of their health care experience. How is the top reacting to that? You're going to be in Austin at the Dell Medical School, which is an institution. How do you kind of bring those two pieces together, the top and the bottom?

BR: It's a great question. One thing, the more you do things like this, the more you find people who want to support this type of thing. We have been very lucky, right? Dell Medical School is only in their second class, but they're the med school at the University of Texas Austin, which is a huge institution, right? They were all very excited to partner on this. We found other organizations that are excited to be a part of it and are completely embracing it. We have several government people registered to attendance here from several different agencies.

When you find the right people, they get very excited about it, and they want to get very involved in it. They want to help further the conversation. It's been great. I wish I could tell you I had a great strategic plan of how I was going to go find every sympathetic voice out there, but I don't.

LC: Well, that's a movement. That's how a movement starts. It's very organic.

BO: Just on that note, the way I look at it too is in any given industry, you have startups that are putting pressure on the incumbents, right? Those startups are doing things because there's an unmet need. The incumbents either embrace it and get on the train or they could potentially get disrupted in a big way. I see the event as where you're bringing in people with stories that have been kicked out a lot of health care because there hasn't been a solution for them.

If I was an entrepreneur, I would want to go to What's The Fix? because I want to hear what people are doing that hasn't been fixed yet, so then I can see those stories and then maybe get involved and try to fix them.

BR: One thing just to build on top of that is as Bryce said, there's a lot of entrepreneurs and startups and established companies who are trying to disrupt health care, but I might argue one of the place that disruption needs to start is by listening. Listening could be the next big disruption in health care because the industry isn't good at it. If they really start listening to people and listening to patients and caregivers, that can change a ton. Because to your point, even established companies are out there trying to fill a need, but they might be missing on the need that they're filling. The more they're listening, the more I think we can drive change.

LC: On that point, how can people listen and participate and learn more from What's The Fix? I think I heard that it's sold out for the Austin event, but there's other ways to take part, correct?

BR: We want to be more movement-like, we don't charge anyone to attend, and we stream everything online. We stream the entire thing for free. The website is WhatsTheFix.info and you can go there and register for any of it.

LC: You had mentioned earlier about Wheezy Nurse, the Twitter advocate for patients. What is her role? I'm assuming it's on the social media site or maybe the online participating piece of the conference.

BR: We streamed it last year and we did an okay job streaming it. We put some thought into how to do it, but we didn't go crazy. I think one of the things we realized is the virtual audience is as important, if not more important than the audience in the room. We wanted to really focus on how do we tie those two audiences together. One of the ways we did it is by having a host for the first time, and her goal is to be the voice of the online audience, whether it's questions, whether it's interacting with people, whether it's doing online-specific content. I'll give you a quick example. Food is a big issue, right? Nutrition's a huge issue and not understood well.

We are working on producing recipe cards for everything that we're going to serve there that will have a cost per meal on it and the time to make it so that people can understand going to McDonald's takes you half an hour and might cost you five bucks. You can do this in your house in 20 minutes and it cost you $1.53 per meal. Amber or Wheezy Nurse is going to be doing a lot of that special content with the food people and then throughout the day summing up things for the online audience, asking questions on behalf of the online audience and generally interacting.

What’s The Fix? speakers will share how having no options meant creating their health care solution

“He was bedridden for 11 years, and while bedridden invented the surgery they would ultimately perform on him to save his life.”

LC: If you could sum up, step back and share with us the spectrum of people, stories, experiences that people can expect to hear from at this year's What's The Fix?

BR: Sure. We have people like Bryce, right? You've already been teased a little on Bryce's story, and Bryce is completely inspirational. We have somebody else who had another rare disease, who was bedridden for 11 years, and while bedridden invented the surgery they would ultimately perform on him to save his life. He's speaking. We have people who have gone through autoimmune diseases and started to track absolutely everything they did and were able to look at patterns and look at triggers and get themselves off medication based on their tracking.

We have people like that. We have a father-daughter, Bodo Hoenen and his daughter Lorelei; she's eight. She woke up paralyzed in her arm. They partnered to build her an exoskeleton to help her have use of her arm and did a lot of it through crowdsourced innovation. They're speaking. Then we have a few panels on one, which I'm really excited about, about mental health. The host runs NAMI in Austin, which is the National Association for Mental Illness. She has a family story too, right, because all our speakers have a story that's gotten them to where they are. She's hosting a panel with a priest and with the sheriff of Travis County about driving change in mental health in the community. Then we have another panel who's going to talk about how they built a whole nonprofit around helping with pregnancy and birthing for multicultural [communities] and really focused on low served populations. That's a lot of the people. We're also trying to build a lot of experiences around it, so you won't just be hearing from the individuals.

LC: I want to thank you both so much for joining us today and sharing your stories and this really exciting event, which people can follow in Twitter by following #WTFix. Thank you, Burt, for sharing the inspiration behind What's The Fix? I'm really excited to see where this movement goes, and I really appreciated your time today.

BR: Thank you.

LC: Bryce, it was a pleasure to talk to you today. I'm really excited that you're taking part in What's The Fix? and sharing your story about sequencing.

BO: Thank you.

LC: Thanks for listening to this episode of Health Changers. You can find more information on all of our episodes at cambiahealth.com. You can also follow us on Twitter @cambia. Please subscribe to HealthChangers on iTunes or Stitcher and leave a review. Thanks for listening.

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