Last year when we recruited Steve Burrill as an advisor to Mendelspod, I asked him for his thoughts on where we should take the program. He replied without hesitation that we should always connect the stories to the end goal, that of improving the lives and health of people around the world. I found it good advise worthy of Steve’s experience and vision.
This year we’ll be producing a special series about the ‘Engaged Patient’ and later another series done entirely with physicians as guests. Yesterday we began planning the patient series with Ryan Witt, a new associate producer at Mendelspod. Ryan is a young man in his mid twenties who started a non profit to advocate for patients after being deeply affected by his grandfather’s death from cancer. He’s a big thinker for his age, desirous to make an impact in healthcare. I’m looking forward to working with him on the patient series and other projects.
I thought I’d jot down a few notes from our session and put them out there so that we might get some feedback in developing this series.
Everyone has their own stories about being a patient. Ryan has his story about his attempt to find new medications and ongoing clinical trials that might have saved his granddad. He feels convinced that some combination therapy might have gone a long ways to beat back his grandfather’s cancer, and has joined several discussion panels at the FDA to urge more openness to new treatments for terminally ill patients.
I have my own story. Like most others, I took my health for granted. Until it was threatened. I didn’t see doctors in my youth. Why should I? I shook off the occasional flu bug and ankle sprain until in my late twenties I didn’t recover from a virus. A pressure in my head went on for weeks and months until finally I asked a friend what to do and he referred me to his doctor. I saw the doctor. And one after him, and another and another. I went four years seeing specialists, having brain scans, CT scans, taking way too many courses of antibiotics--and all to no avail. Then I happened almost randomly on to a doctor who finally gave me a correct diagnosis. I suffered from a ‘status migraine.’ What? A migraine that caused pressure in my sinuses and congestion and malaise? A migraine that had gone on four years? Indeed.
I got lucky. It turns out my doctor was somewhat of a specialist on headaches, having studied them in a special program with NASA. Migraines can mask themselves in many forms, one of them being the symptoms of sinusitis. I was started on medication, and in a week I’d improved 75%. It was a tremendous relief. This doctor was my hero. She made me believe in my life again. With the help of some medication, a referral to an excellent headache clinic in Mountain View, CA, she gave me a new life. And I’ll always have a special place in my heart for her. I do believe in good doctors. And in Western medicine.
My business partner, Ayanna, has had many surgeries and lived a good deal of her early twenties in a hospital. Ayanna brings a European outlook on healthcare. The difference between her experience and Ryan’s and mine is not insignificant. Ayanna seems to believe more in doctors. She sees them more as partners, and I sense that she’s had a better experience with healthcare than Ryan or I.
What are the big issues for patients in the twenty first century? It’s helpful to define ‘patient.’ Just when do we become a patient? The term has been undergoing some rethinking of late. You’ve probably heard presentations by Steve Burrill and Eric Topol who are talking about health consumers who hire advisors, rather than patients who submit themselves to autocratic doctors. I hear stories every week from folks who say that they know more than their doctor on many topics related to their own health. Should we seek another, more useful term than patient?
Looking at some of the conflicts that a patient encounters is useful. Perhaps the most common one is whether to see a doctor. There are many factors which go into making this decision. We ask ourselves if the situation is that bad. We think about our insurance or the money it will cost. We consider the time it will take.
Another conflict is whether to research the health issue online as we do many other problems in life. Should we turn to the Google doctor. Will we find an answer to our specific problem or be led on a goose chase and just end up bewildered and convinced that we have a life threatening illness? I’m sure you’ve had those nights when you couldn’t sleep, desperate to find answers to health problems, browsing one site after another, becoming more frightened with each one. Yes, I do have those symptoms. Do I have such and such? Or we feel comforted reading stories of others who have had the same symptoms. Often we’re left more confused than when we began.
Perhaps the most important single event for a patient is diagnosis. It was for me. Just knowing what I had made it so much more manageable. I was able to stop going down all those blind allies, laying there at night wondering if there was something seriously wrong with me like a brain tumor.
In our discussion, we pinpointed a central conflict for patients: whether to be open to new ideas to improve our health or not. This might be going to a doctor in the first place, or it might be firing one doctor and going to another. This might be looking online, or even asking a friend what their experience is. It seems to me that the moment we seek help is the moment we become a patient. Our health problem reaches a certain threshold where we say, “hey, I need help.” That seems to be a pivotal moment, an important psychological transition. We acknowledge that we have a problem that is bigger than our present capacity to deal with.
All of us have limited resources, some more limited than others. Where should we go for help? It takes time and money. How much of our lives should we spend pursuing this help? These questions led the discussion to consider the Quantified Self movement and those individuals who spend a good deal of time on their health. And much of it with the idea of prevention, rather than pursuing answers to a problem after it has occurred.
On the other extreme is the person who takes his/her health for granted, who says, “hey, the goal here is to not have to think about health; there are other more important things in life.” I always return to an interview Charlie Rose did with Christopher Hitchens just before Hitch died of esophageal cancer. Rose asked Hitchens:
“Now that you have this health condition, looking back, would you live differently? Would you not have smoked and drank so much?”
Hitch replied, no, he wouldn’t have lived differently. He told Charlie that he had chosen the life of a writer and this was part of it. That the goal of life wasn’t to live the longest but to pursue your passion. Something like that.
Perhaps Hitchens sounds naive to most of us. Are Quantified Selfers a bit too obsessed? Does focusing on your health that much end up bringing on problems in a self fulfilling kind of way? And what about those who are getting their genome sequenced when they are healthy? Does this bring unhelpful anxiety about diseases one doesn’t have but to which one is prone?
For the series, we’ll have on patients who reflect different ways of going about preventing disease, or recovering from serious health problems. Most importantly we want to hear patient stories. What are your thoughts? What topics do you think are important in exploring what it means to be a patient in our day? Join in.