Is it more important to have the right answer or to ask the right question? After the past few weeks interacting with our healthcare system, specifically its oncology components, it has become abundantly clear to me we are asking the wrong questions. A few years ago, at TEDxAustin, I reflected in my talk on the fact that we had to carry a CD of my wife’s tumor images from Austin to Houston for our discussions at MD Anderson Cancer Center. After these past few weeks, I wish that was the only challenge we have in moving information around the healthcare system to provide the right care to a patient.
This system is broken, and physicians, health care providers and many, many others, beyond the patients, are incredibly frustrated by it all. As Maureen’s oncologist was kind to note about my work on CLOUD, “You may be doing more good than most can imagine.” I am usually pretty polite, but as my wife’s breast cancer metastasizes, I’m putting the gloves on, quite literally. (More on this photo in another pullout image below.) We have literally wasted billions of dollars by thinking we have the right answer, rather than pausing for just a moment, and thinking about the questions. It is critically important to note that I am not punching at individual people or figuring out where to point blame. That is useless. As we enter the ring to create change, it is important to know why we’ve put the gloves on and what the target is. For me, the target is cancer, and as I watch researchers, oncologists and their teams interact with patients, I can tell that is their target, too. These are good people, and they are as frustrated with the state of affairs as anyone.
So, if cancer is our shared target, how is it possible that a critical sample necessary for genetic testing can not make it from Austin, Texas to Cambridge, Massachusetts in under 3 weeks? How is it possible that a genetic test that takes 14-17 days can’t start because it took 26 days for someone to finally take action to find my wife’s sample in the archive at Clinical Pathology Labs in Austin, Texas? How is it possible that Foundation Medicine, after taking action on September 3 and 4 on an order executed by our oncologist on August 29, would not act again until September 19, when our oncologist checked in? Even more disturbing, how is it that I had absolutely no visibility in to any of this, so I could jump in to the ring to get things moving?
As I said politely, yet directly, to each of the folks with whom I interacted, this is not a “sample.” This is a bunch of cells from a woman, a beautiful woman, my wife, Maureen, mother of 3, architect, my bride of 24 years. That is human-centric thinking. Because this testing is not yet complete, we don’t know at a genetic level any of the necessary information about receptors to pick medicines that can be targeted. Tomorrow, Friday, Maureen will get front-line drugs for her triple negative breast cancer that are an entirely appropriate therapeutic course of action. It may be the case that when we do get the genetic results this course of therapy is exactly the right one. However, within the 26 days we have waited, not one was spent on the 14-17 tests required by the genetic test. Each of the wasted days came from inaction.
I get notifications on my phone all day, for things that I want to keep track of, from weather to technology news. I set up these automated alerts, because there is lot going on, and if I have to think to look, then I may get distracted and not look. If I can get notifications for things as simple as this, then it is time to start asking the right questions and architecting an information environment and ecosystem that addresses the real problems, like this missing pathology sample. Imagine if the water ecosystem required the sorts of actions that we take to move information around? Imagine if before a raindrop evaporated, someone had to send it an instruction to do so. Then, they had to send it another instruction to interact with some other raindrops to form a cloud. And then again, it had to be told to fall back out of the sky as rain. It wouldn’t work, would it? The water ecosystem is a complex adaptive system where the necessary instructions are embedded (More on this thinking from my talk last year at TEDxTrastevere in Rome).
The problem with today’s approach to health care workflows is that the “flows” are designed to work around a health information architecture that requires us to tell every raindrop, and every cloud, what to do next. CLOUD – Consortium for Local Ownership and Use of Data – is fighting to create a new language for our human raindrops, because this isn’t just about my wife’s sample but every other raindrop that is also a mother of three, or a father or an uncle, dad, sister, brother, cousin… this is about us… this is about humanity. It is time to take the gloves off and start jabbing, crossing and hooking until we defeat our real enemy. Cancer.