A colleague recently concluded a meeting with a Victor Hugo quote that reads, “There is nothing as powerful as an idea whose time has come.” The quote stuck with me even after I had moved on to the other work of the day, and then I found myself thinking about it again the next morning before I began to reflect on how significantly it related to the journey I had been on.
When I first started analyzing medical data for insights, I had no formal training and truly no real understanding of how I might use it someday.
At the time, I wasn’t even aware of the “big data” movement that hadn’t quite made it to be the buzzword that it is today but was certainly on the periphery of everyday life. I didn’t notice the big changes that were on the technology horizon because I had other things on my mind.
My husband, William, had just been diagnosed with Stage IV cancer and was given a grim prognosis of a short, six months to live. All at once our whole world was crashing in on us and neither he nor I knew the first thing about what to do. I was very emotional at first and have come to realize this is a pretty typical reaction for someone who had no clue how to turn an upside-down world right side up.
I also didn’t know it at the time, but for most of my life I have apparently been what I now jokingly refer to as a “data nut”. I pay attention to details, and I store them in my brain for reference later. This is not unusual, and there is a pretty simple everyday term that we all use from time to time to describe the same process – it’s called our memory.
I’m not sure if mine is like everyone else’s, but I definitely have a particular way that I store details. I think of it like a sort of binary code for computers. I like numbers, and I like symbols and acronyms. I don’t store the information as I see it, but instead it is a type of code that condenses the information until it is needed. On the surface, it probably would look like a jumbled mess without meaning, but when organized properly, it offers a value somewhat like a library. In fact, I have started to think of my memory storage system as a set of filing cabinets full of small cards with key information, a lot like the old card catalogs we used to find in the library. Each of these cards is alphabetized and coded to a specific location where the longer strings of code can be found. These codes make up a total memory that is accessed via a key word trigger. With any subject, the brain goes to the appropriate file and provides the information for the location of the “book”. In the book, is the complete memory.
Though I only recently thought about how all this works, it is clear from the large volumes of information that I, like everyone else have been consistently taking in data from the outside world and unknowingly organizing it in a sequential order to store categorically for use when needed. This is an automatic process that happens during conversations, problem solving, or any other scenario where I need the data and seems to be a fairly efficient way to hold quite a bit of information – until the information exceeds the amount of storage space available – which is what happened when I began sifting through hundreds and then thousands of pages of medical data.
Because of the importance of the information, I had to find a way to store it outside of my brain where I could access it at any time in the hopes that I could change William’s outcome for the better because I was creating a whole new library of information at a very rapid pace. What didn’t fit on the shelves in my brain was overflowing into piles of documents on my dining room table, in notes on my phone, file folders in my car and eventually binders and boxes in my office. For each appointment with a doctor or specialist, I would load these files into my car.
I had started the process with a paper copy of the lab results from the very first oncology visit, but the pace at which we received information translated into a sizable volume in a short period of time. We were merely weeks into the process when the volume of information was too much to keep up with in my memory, so I began storing the information in binders, notebooks and computer documents and spreadsheets. Because I was storing both what made sense to me and what didn’t, I had a lot of questions.
Throughout the entire 15 months that William lived after his diagnosis, not a day passed that I didn’t pour over some type of data and continually cross-reference the new information with the stored information looking for patterns.
Early on I noticed that whether or not I understood the purpose of each recorded value I was making note of, I began to see that the data was painting pictures that gave rise to new questions that I could ask and patterns were actually emerging. This is where I learned that visualizations are universal, and you do not have to understand them for two people to see the same thing and converse about what they see.
The charts I made became a powerful way to share information that was otherwise being lost.
Equally as important, they created a channel to ask simple questions about complex things despite my own lack of knowledge about the underlying terminology. These images served as a sort of sign language that I could use to point at and follow the curves and they are actually what bridged the gap in the language barrier between educated and trained medical professionals and me as concerned caretaker and wife.
What should have come as no surprise to me (but did) was that after months of looking at the same types of data over and over I began to have an understanding of what things meant, even if I could not fully converse about the medical context. I realized that what you can measure, you can track, and what you can track, you can change. The data had confirmed more than just what was in William’s medical record. It actually confirmed its own value by revealing that the rigorous process of recording, tracking and adjusting had created changes over a period of time, and these changes turned out to have an impact on my husband’s quality of life.
Before, I had only thought about beating cancer and now saw that a pattern of managing cancer had good results and the possibility to achieve better outcomes.
In the end, I failed to achieve the result I wanted, but I believe this is only because I didn’t know then what I know now. William had once said to me that true failure only happens when we decide not to try anymore and so after he was gone I worked hard at finding the silver lining in this experience. This led me to leverage everything I had learned in my own tragedy to start a company called GIANT Informatics to solve some of the greatest pains of cancer patients — the need to know what is going on in their bodies, what they can do about it, and what their best chances for success looks like.
GIANT is an acronym for Guiding Intelligent Analytical Nascent Technologies.
Our corporate mission is to help cancer patients and their providers achieve better outcomes by harnessing the power of technology and data to provide actionable insights.
Our software, called CureNav, is poised to positively impact the cancer patient journey. I am humbled to have a front row seat to watch an upside-down world be turned right side up as the revolution in health technology that wasn’t visible in 2014 makes it way to those who need it most—the patients.
Perhaps what Victor Hugo meant to say is, “There is nothing as powerful as a GIANT idea whose time has come.”