This piece by Lizza Miller was written as a letter in response to the LA Times op-ed piece, “As I lay dying“, by Laurie Becklund – a powerful depiction of her experiences dealing with her breast cancer and the void of big data for personalized cancer care.
Dear Laurie,
Thank you for sharing your powerful story. I only wish it could have been published sooner so I could tell you personally how deeply it spoke to me. I too have been living with a secret – trying to pretend everything is fine, while attempting to adapt to what is insultingly referred to as the “new normal”. Although I wouldn’t claim to understand what you went through, I can tell you that walking along side a loved one while they embark on their journey of survival has similar challenges and frustrations.
Several years ago, my husband George lay dying in the ER with sepsis, cerebral meningitis, pneumonia, and several other issues that came on suddenly during his rapid deterioration over a weekend. I vividly remember the moment the doctors finally presented me with the explanation. He had cancer. Multiple Myeloma (MM), to be exact. For nearly two weeks I watched as he recovered, not knowing himself what his diagnosis was or what it meant. But I knew what it meant. I knew it was a death sentence. I knew there was no “cure.”
We have been battling tirelessly – not against cancer, but against the antiquated health system and the various doctors, nurses, administrators, and pharmacists who are handcuffed by the void of data that prevents them from truly fulfilling their calling. They want to help. However, the disconnected, incomplete databases that our healthcare system relies on are based more on medical classifications for insurance claims than they are about providing a holistic picture of a patient. Important information such as George’s diagnoses, medications, adverse events, lifestyle habits, and genomic structure were difficult to access or nowhere to be found. How did they expect to find his cure, if they knew nothing about him, or any of the countless other individuals with MM, with similar circumstances, whose data may provide guidance? We constantly asked his doctor about these other patients – how were they doing? What side effects were they having? How did George compare and how could we increase the probability that he would survive?
You mention that “in the Big Data-era” the void of comprehensive databases is “criminal.” I would add that the dearth of Small Data – meaningful, relevant, patient-centric data – also fits in that category. Filling these voids is important; not only for patients, but for loved ones, doctors, caregivers, and researchers. There is so much room for improvement. And there are so many possibilities. Technological innovation is an imperative. Fortunately, this innovation is beginning to occur. Companies such as Flatiron Health and PatientsLikeMe have realized the power of technology and what it could mean for big data and, ultimately, cancer treatments. Likewise, our nation’s leader realizes this is a priority; it is a priority for me as well.
My goal in life – through my education, my research, and my company, DatStat – has been to do my part to make the world a healthier place. For the past 16 years, I did so through technology that fueled health research. One night, lying in a hospital bed with George, I realized two things: first, I could no longer live trying to keep George’s cancer a secret in my professional life because it significantly contributed to the passion of my work. Second, in order to make the kind of difference I needed to make, my focus should shift from research data that traditionally informed treatments, to data from treatments that would inform patients. Our next client was the Chronic Obstructive Pulmonary Disease (COPD) Foundation, who is doing just that. The goal is to register 100,000 patients by the end of 2015. Similar to the companies I mentioned previously, this comprehensive database will enable patients and doctors to tailor COPD treatments based on the outcomes and experiences of individuals with similar circumstances. This model of aggregating small data to form big data – driving more informed decisions – is exactly what our healthcare systems needs in order to truly change lives.
It is unfortunate this innovation has come too little, too late for you to find your cure. But sometimes it takes one courageous individual to spark the fire and be the catalyst for change that saves others. Rest assured your legacy will live on. If I have anything to do with it, your challenge for a new comprehensive data collection system will be met and exceeded. People like you and my husband, will no longer have to “climb up ladders and fall down chutes”.
Your admirer,
Lizza
