“Am I getting better?” We were driving back from a doctor’s appointment when my Mom asked the question that changed my life.
At the time my Mom had recently completed her third chemotherapy cycle, and virtually every conversation about her health was related to her CA-125 levels, which were measured every month. Her last result had been flat from the month before, and we had just done the blood draw and would find out later that day what her new number was.
“Your last CA-125 was good, and we’ll get even better news today,” I said hopefully.
“I am not my CA-125 level,” my Mom said quietly.
It was a powerful moment. I realized that the question she was asking was so much bigger than a blood test or CAT scan. “Am I getting better?” was the very definition of the patient-centered, big-picture goal. And there was only one person who could answer it, and she didn’t know.
I started to break the question down into pieces. How could you track if you are getting better? Or know if a treatment or medication is helping?
1. You have to track changes from day to day, because how a person feels on any given day is incredibly subjective. Do I feel better or worse than yesterday?
2. You need to have a detailed inventory of quality of life symptoms. What is bothering me, and how often does it happen and is it happening more or less?
3. You need to watch for side effects from all your meds, which means knowing what to look for, which means hours of research and a great memory.
4. You need to make sure your doctor knows what is bothering you most. Which means organizing the above into something you can explain in 2-3 minutes, and that can show continuity over time.
I first did a ton of research to see if anyone had figured out how to help my Mom do these things, there has to be an app for that right? There wasn’t. In fact, I could find almost nothing that even talked about the importance of capturing patient reported information, except for the wonderful work being done by PCORI, which reassured me that Mom and I weren’t crazy to be asking this question.
I became a bit obsessed with this because of my Mom, but also because it struck me that answering this question wasn’t just for people with Cancer. At the time I was taking a couple vitamin supplements and also experimenting with mindfulness meditation to reduce stress, but I really didn’t know whether they were making any difference in my life. And the more I thought about it, the more I became convinced that understanding whether something is working, and whether a patient is getting better are truly two of the most important aspects of healthcare.
Mom had a lot of good days and a lot of bad days before eventually losing her battle with Ovarian Cancer. And then it would be a couple more years before I was able to make this my life’s work, but that day in the car, that simple question, is why there is a TapCloud and why we work tirelessly to help as many patients as we can.
In the past two years, we have discovered that the answer to the question matters even more than we first thought, and has profound implications that touch nearly every aspect of healthcare, from diagnosis, to treatment planning, to comparative effectiveness assessments, medication compliance, quality of life and even end-of-life care.
What started as a conversation with my Mom, has grown far beyond that, and we have learned so many things that I never could have anticipated in the car that day. In this space we will try to share some of those learning’s, but more important let you hear directly from the patients who continue to teach us every day.