Nothing could have prepared me to hear the words “it’s cancer”. In 2013, my partner Ric was diagnosed with non-Hodgkin’s lymphoma. He was at the peak of health, running five miles a day, and felt great. But this wasn’t a dream. The lump we found was actually what we feared most. We were about to come face-to-face with cancer.
Immediately, your mind begins to ponder all of the consequences to come from this sudden realization—it’s beyond overwhelming. This disease crashes into your life, leaving you disoriented and with no logical next steps. We knew we had to do something to fight this, we just didn’t know what that something was.
We were ready to fight through it, to stay alive. But other thoughts creep in…will I lose my hair? Will I be able to work? What are my treatment options? Part of Ric’s job was being interviewed on TV…could he still do that? We then tried to educate ourselves—diving into a sea of information about treatments, medications, side effects, and tips for managing it all. At times, well-meaning people shared contradictory experiences. We tried downloading many apps, most of which were huge disappointments.
And as we trudged through rounds of chemo, we began to realize that while doctors apply their tremendous expertise during treatment, the very nature of cancer protocols, particularly side-effect management, is inevitably trial and error because everyone is different. Consequently, doctors ask questions and patients do their best to remember how they felt. And when they felt it? And did it change the next day? Or was it the next? It is hard to remember the specifics of a skin rash or point to the exact moment of discomfort. One day up, the next day down—and very difficult to recall everything that was happening to us.
Treatment had us caught up in a wave of ups and downs.
Treatment had us caught up in a wave of ups and downs. The moment we felt like we’d managed his symptoms and we were feeling good about his well-being, something unexpected would happen and the wave would come crashing down—leaving us helpless and feeling like a victim.
I was motivated to do anything to help make this situation better. Then something clicked for me. My career was in collecting and analyzing data at large companies. I’m a “numbers guy”. So I decided to create my own system to track everything Ric was experiencing and to gather more personalized data—about his diet, water intake, exercise, social interaction, mental engagement—all by hand.
Ric would tell you he found my daily surveys initially annoying. “What was the point?,” he complained. But something changed when we noticed a correlation that the doctor hadn’t yet noticed. Ric was having an unexpected side effect that we couldn’t seem to manage. We came to our next appointment with my chart of patterns and notebook of numbers. Ric was taking an anti-nausea drug and constipation was not a common side effect, but because of what we were tracking, I was able to pinpoint it and realize what was happening and when.
As a result, the doctor switched Ric’s medication and almost immediately his symptom was relieved. Our tracking made a huge difference and we realized we had options! We now had an advantage in this fight—we could know with greater accuracy what Ric experienced and why. This was individualized information that helped empower us to fight. And our doctor began to have actionable and personalized insights. Protocols were shifted. Ric began to more easily navigate the waves of chemo. There was less trial and error. He felt more like a human and less like a victim.
We had discovered something and we wanted to find a way to share this with the millions impacted by cancer. This system made it possible to harness the power of patient-reported outcomes—something the healthcare industry calls PROs but hasn’t done a lot with. Yet.
The chemoWave app
Ric is now cancer-free, and at the encouragement of his doctor, we created the free chemoWave app to give the same opportunity to millions of other people impacted by cancer in the U.S. and around the world. chemoWave is a mobile application that empowers cancer patients to track their journey, but it is much more than a symptom tracker. chemoWave is a virtual advocate for cancer patients—a companion helping them do everything in their power to feel better.
It’s a FREE mobile app that helps them record things in real time—like mood, overall condition, medication schedules, water intake, and much more. It also includes new features like automated activity tracking (tracking steps in partnership with Apple Health), tracking weather and geolocation, and a brand new medication management system. The app also equips you with interactive charts and trends that show the ups and downs, and help you take control.
Over the past few years of building and tweaking the app, and then launching version 2.0 last month, this app now goes far beyond the simple analysis system I did for Ric. The technology we’ve built creates targeted personal trends and insights, so you can learn from your own journey. There are new opportunities for intervention throughout the daily grind of cancer. It also allows you to share your activities and experiences with your care team, helping you become a better partner with doctors, nurses, family, or friends.
We have more than 3,000 users from all 50 states and collectively they’re using chemoWave to manage more than 70 different types of cancers. Breast cancer is the most common diagnosis among our users, by a two-to-one ratio over the next most common (colon cancer). And interestingly enough, nearly one-third of users are older than 65 years old. We’re now developing new insights every day—for the individual, the cancer community, and the researchers looking at the future of treatment.
Real-time data helps patients and doctors collaborate more efficiently
Our technology is now arming care providers with real-time data on their patients’ experiences to collaborate more efficiently, make more confident decisions, and improve patient outcomes. It’s improving medical research methodologies and the value of clinical data with insight on patient experiences and activities, lifestyle, and profile information.
And as is common with a solution that stems from a personal experience, the scope of the technology is widening far beyond what we ever thought when managing one individual’s specific form of cancer. Why limit these PROs to cancer? Why not help physicians with post-surgery patient tracking symptoms? Why not use it to examine a void in programs that meet the needs of Latinos and other minority groups around issues of cancer and health?
These patient-centric interventions are what can be called “scalable” and now we’re talking with various hospitals and healthcare organizations about utilizing them in big picture changes in treatment protocols and clinical research. There has been a lot of progress made in patient empowerment and I believe that with technology and innovation, there are great things ahead.