Meeting Zoe Keating
Meeting my Heroes is an occasional essay series from Matt Carmichael.
On telling the story you want and need to tell
When I started at Ipsos I was given a creative brief. “Ipsos is thought of as a traditional, somewhat boring research firm. Newer firms are winning our business from us. But the good news is that we actually are quite forward-thinking, so how can we tell that story?”
As mentioned, around this time I read a book by Chuck Klosterman that talked about this idea of “thinking about the present as if were the past.”
Because I had a survey at my disposal where I could ask 1,000 people a day essentially anything I wanted to, I had a way to pivot this slightly.
What questions can we ask people today that would give us an idea of the future? If Ipsos wants to see like a more future-thinking company that can help its clients plan for those futures, what better way than to write about the future? And thus What the Future was born.
From the beginning, I wanted to talk to people outside of Ipsos. This was for two reasons, one because it was the right way to tell the story. The other reason was selfish: I wanted an excuse to keep talking to interesting people and to meet more heroes.
I also wanted to bring in more perspectives than just people I worked with and their corporate clients. It worked amazingly well. I work with a lot of super smart people. But to pull in an audience, I wanted to borrow other people’s networks. I also wanted to talk to the people that our readers are already reading.
I started by writing an issue about housing, talking to a lot of people I had met during my Livability.com grad school program. My first call was to Richard Florida because I knew if I got him, I could get anyone and I figured he’d say yes. I was right on both counts. From there it all fell into place. I interviewed CEOs, a former governor, a current mayor, professors, authors, artists, and Zoë Keating.
Zoë was the archetype for how I wanted WTF to work.
She’s a cellist and I listen to her music all the time, especially while writing. But I didn’t talk to her about music. Instead, we talked about the healthcare system. Her husband had died after a battle with cancer. It was a tragic story, made more tragic by his awful experience with doctors and insurance and all sorts of complicated things. As that was happening, Zoë wrote about it on her blog and gained the attention of all sorts of important people including then-Vice President Joe Biden and his cancer moonshot.
She was the example I gave to my coworkers when I was pitching the WTF idea. People smiled and nodded. “Talk to a cellist about healthcare, uh huh. Sure.”
Thus, when it came time to do the healthcare issue I began my pursuit. It took months, but I didn’t give up. She seemed interested so I just kept coming back to her.
She was touring so I went to one of her shows, knowing she usually signed autographs afterwards, so I could introduce myself and try to move things along (and also because I love her music and have written with it as a soundtrack for years.) In the end, I got her scheduled and the story was sad, but perfect.
Zoë Keating is an amazing cellist. Seriously, what she does with computers and sound loops is so cool and mesmerizing and when I’ve seen her live I still couldn’t figure out how it all worked.
But more to the point, when you want to learn about something you should absolutely 100% talk to the experts, or read what they’ve written. Dig into the data. Watch interviews on YouTube. Do your homework, in other words. But that will only give you one critical part of the picture. To really understand an issue, learn not just from the people who shape it and guide the issue. Learn from the people affected by that issue. Get as many perspectives as you can. Because sometimes the strongest voices on an issue are on the outside, not the inside. And sometimes, the strongest voice is an instrumental.
Here’s how the piece turned out:
Three years ago, Zoë Keating lost her husband to an aggressive form of non-smoker lung cancer.
At the time, she lived in a rural area outside of Santa Rosa, California, and was independently insured. She had to balance her career as a composer and cellist and her dual roles as mother to a young child and spouse to the patient. Jeff Rusch, her husband, needed positive reinforcement to keep up the energy for his fight. Yet privately, she knew the prognosis was dire and unavoidable. Keating educated herself about treatments, searched for specialists, and trekked from one doctor or hospital to another to gather medical records. Of course, she’s not the only caregiver who’s faced similar challenges. But Keating set herself apart, by blogging about her experience with such detail and passion that her story spread. She would eventually give a TEDMED talk, appear on a healthcare panel with President Barack Obama and participate in Vice President Joe Biden’s “cancer moonshot” summit in 2016. When she thinks What the Future, she wonders how others might someday have a better experience than she did.
GenPop: What were some of the most difficult aspects of being a caregiver?
Zoë Keating: Finding out what providers are in a network and finding out what the costs were going to be in advance. That and data sharing—having to get all the medical cases to the specialist without having to fill out 10 pages of paperwork every office visit. In the realm of billing, trying to understand why something wasn’t covered by the insurer then trying to figure out how to fix it myself. Then [after Jeff died] I moved and the rules changed. I had to relearn a new system and transfer medical records. Also, I travel a lot and it’s not always clear if I’m covered if something happens to me in another state.
Few find the U.S. healthcare system easy to navigateSource: Ipsos survey conducted between June 6 and 8, 2018 among 2,007 adults in the U.S.
Most people would be interested in a healthcare navigatorSource: Ipsos survey conducted between June 6 and 8, 2018 among 2,007 adults in the U.S.
GenPop: You’ve written about how you had to drive discs of medical images between doctors.
Keating: [My husband] had cancer affecting multiple parts of his body, so there were different specialists dealing with each part of his body, and they didn’t seem to have ways to communicate with each other, so when he had an MRI it had to be read by a brain specialist at University of California, San Francisco, which was 75 miles away. And it also had to be read over at University of California, Davis, which was 90 miles in another direction. His type of cancer doubled in size every three weeks, so it was really imperative that it get read immediately.
GenPop: Caregivers play many roles. You were a spouse and a mom but also a researcher.
Keating: Over the course of my meandering through the American healthcare system on my own, I learned that there isn’t one person who’s holding all the information. If you have a serious illness it becomes crucial that somebody is looking at all the data coming in and all the information on things that are happening, and they’re looking at the big picture. That ends up being the caregiver most of the time. The fear is that if you aren’t paying attention you could miss something because you’re not a medical expert.
GenPop: What other roles did you play?
Keating: The caregiver as a medical information hub and expediter. You’re the person who is going to make the appointment, the person who’s going to call the doctor’s office and say, “Did you get the records?” You are the project manager and the project is to protect your loved ones.
GenPop: In the survey, a large majority of people agree the system is hard to navigate. Your follow-up question was if people would like a person, or eventually perhaps an artificial intelligence system, to help them navigate. Essentially a healthcare porter or navigator. About half said they would, which seems low to me.
Keating: Before my experience I had no idea that it could be so complicated. I couldn’t even imagine the world that we were plunged into. You don’t know what you don’t know.
GenPop: It seems like this “navigator” is an idea whose time has come, though. Especially if, as the survey suggests, it was provided by your primary doctor or a nonprofit and then covered by insurance. Your final question hints at yet another caregiver role you played — that of data collector and archivist.
Keating: I used to be an information architect before I was a full-time musician, so it was natural for me to become the information architect of my husband’s Cancer treatment. You have a patient who generates information. Where did that information go? Does anybody learn from the experience? They go through treatment. Does anybody learn from what happened to them afterward? And I fear the answer is, “No.” Part of it is because the information comes from so many different places.
Most would like to provide more feedback to the healthcare systemSource: Ipsos survey conducted between June 6 and 8, 2018 among 2,007 adults in the U.S.
Source: Ipsos survey conducted between June 6 and 8, 2018 among 2,007 adults in the U.S.
GenPop: You collected information about Jeff, such as what he ate and how he felt. There was information from his various doctors. There was information being shared in virtual communities of survivors and people going through the same treatments that Jeff was. It seems if that data were gathered, the system could learn from it, especially as AIs are used more in the healthcare system.
Keating: You have an oncologist and the data of how things went during the treatment, or if the person survived or didn’t survive, or how they did on a particular medication. Does anything get tracked afterward other than death rates and what he died of? I have some doubts as to how progress happens. Does progress have to only happen inside of a medical institution like a teaching hospital with trials? Or can data be collected from the field and fed back into improving both the nature of the care and the experience of the patient?
GenPop: You had the caregiver role of storyteller — both in terms of how you inspired Jeff to keep going, and the stories you shared with others, the fans of your music and the caregiver communities you were part of.
Keating: The other elephant in the room was that there was never at any point any medical professional who would have prepared me psychologically for what was happening. I had to kind of teach myself. Each patient is different. I’d want to know everything; that’s my personality. But my husband would not. Sometimes there’s a disparity between what a doctor needs to tell a family and what the patient needs to hear. I don’t see that doctors think that they’re responsible for that. In retrospect, I could probably have used some counseling at the time.