Riding the Wave Through Chemo: Cancer Journey Leads to chemoWave App for Reporting PROs
Matt Lashey, MBA
In 2013, my partner Ric was diagnosed with stage IIIA non-Hodgkin lymphoma. The pronouncement that we were facing a fast-growing cancer felt like a slow-motion nightmare; it was disorienting, devastating, scary, and completely out of nowhere. Cancer came crashing into our lives like a tsunami and we were left scrambling to find anything that might help us stay afloat.
Ric did not feel sick. He had been a vegetarian for more than 15 years, was feeling great, was running 5 to 6 miles a day, and was in great shape. We noticed a small lump on his neck but decided not to worry about it after consulting with a doctor who ordered a computed tomography (CT) scan and subsequently advised us that it was “nothing to be concerned about.” We tried to ignore it, but over the next few weeks it continued to grow and eventually became uncomfortable, so we scheduled an appointment to have it removed. At this second appointment, a different doctor inspected Ric’s neck, ordered a new scan, and soon after informed us that this “lump” actually was something to be very concerned about—we were facing cancer. Within days, we found ourselves in the hospital starting the first of 6 aggressive rounds of chemotherapy, rituximab with cyclophosphamide, hydroxydaunomycin, oncovin and prednisone, the regimen known as R-CHOP.
After the initial shock, we tried to educate ourselves. We dove into a sea of resources and information about Ric’s treatment options and potential side effects. We sorted through tips upon tips about what to expect and how to manage it all, but it was difficult to determine what would apply to Ric’s situation and even harder to reconcile so much contradictory information. We paid for apps and digital services that did not deliver the promised benefits. We sought advice from others who’d received a similar diagnosis and been through the same treatment; but time and again, Ric’s personal experiences did not resemble what these well-meaning acquaintances warned us to expect. And we began to get more confused. We soon realized that even though many of the cancer treatments and protocols are standard, every patient is unique.
We now understand that most of the symptoms and side effects patients experience while undergoing chemotherapy can be managed, if not avoided all together. Throughout treatment, doctors ask patients questions about how they feel and patients do their best to remember what happened during the previous weeks. However, patients struggle to recall details of when they felt good and how long ago they felt poorly. It becomes increasingly difficult to remember the specifics of a skin rash or point to the exact moment of discomfort with nausea by the time a one-on-one visit with the doctor occurs. Patients’ memories fade. Or “chemo brain” takes over and patients can’t remember the details at all. Ric and I realized we needed to take daily notes to keep track of the details.
As we plodded through the ups and downs of Ric’s chemo treatment, I noticed that Ric’s various activities and encounters seemed to have an impact on his physical and emotional state from day to day. He clearly felt better on days after he’d been more physically active, and the benefits of visits or calls from Ric’s nephews and nieces were undeniable. He was more easily aggravated when he took certain medications and too much sleep seemed to make him feel worse.
Then something clicked for me. With a background in market research, I’d spent much of my career using data driven insights to help big companies identify opportunities, reduce risks, and become more efficient. I decided to use my research and data analysis skills to help Ric in his time of need. With a goal of helping Ric get through treatment, I created a system on my computer to keep a detailed record of Ric’s activities and experiences, which could help me identify things that might make him feel better or worse.
At first, Ric would get annoyed at my insistence to answer questions while he was struggling to not throw up his food. My constant inquiries seemed useless to him. And truth be told, I wasn’t sure if my system would help. But I was determined to help us regain control in what seemed like an uncontrollable situation and to give our doctor information that would let him intervene earlier to resolve issues.
Our doctor quickly acknowledged the benefits of the system. During an appointment when Ric had been dealing with severe constipation, we shared charts that highlighted an anti-nausea drug might be related to the issue he was experiencing. Ric’s doctor saw what we did. He could see the exact day and time when the negative side effect started—and so he prescribed Ric a different anti-nausea medication. Almost immediately, Ric’s symptom was relieved. We were excited that our system helped to identify the relationship between the constipation and Ric’s anti-nausea medication. We also realized for the first time that we had medication options and that doctors had choices if they had enough data.
Ric was resigned to the fact that he would feel terrible throughout the process. After all, “I have cancer,” he would say. But having the doctor easily change a drug designed to manage one side effect that might be causing another was a real revelation—and motivation for both of us. He could depend on our information to determine if a drug was working as intended or if Ric was drinking enough water, doing enough physical activity, or taking his medications on time. We now felt like we had an advantage in this fight—and a purpose. We knew with greater accuracy what Ric experienced and when. We now had individualized information. And we could give our doctor actionable and personalized insights. So, we started tracking everything we could think of: visits from family members, sleep patterns, weather, moon phases, moods, activities, and more.
We had discovered that far from being powerless throughout Ric’s treatment, that we could play an active role. We later learned that some healthcare organizations had been exploring the benefits of tracking symptoms between doctor appointments. The industry calls this type of symptom tracking patient reported outcomes (PROs).1 We also learned that while the industry talks a lot about PROs, some executives are reluctant to integrate this type of patient information into their current systems, despite the benefits that have been proven through clinical research. Their reluctance stems from the overwhelming government and legal requirements that have turned too much of their work into silly administrative tasks. Also, electronic health records (EHRs) have been dumped into doctors’ files with little regard for the impact they have on patients. The doctor–patient relationship has greatly suffered because of the administrative tasks EHR systems have introduced into their face-to-face time. While many doctors feel the benefits of monitoring patient experiences or PROs are worth the added work, many hospital administrators have been reluctant to integrate PROs because this would add another layer to the record keeping process.
Less Trial and Error
But the valuable daily information patients have about their care cannot be ignored if providers want less trial and error and better outcomes. Results from a recent 7-year clinical trial revealed that a system that enabled patients to record and report symptoms to doctors in real time resulted in higher survival rates among patients and helped patients to live longer with an improved quality of life and less emergency department visits.2 The healthcare industry is just beginning to realize the power of this immediate real-time tracking and monitoring of symptoms reported by patients. Many doctors see they can intervene with their patients when necessary, instead of allowing their patients to suffer in silence until their next in-person visit.
After Ric finished his treatment and was pronounced cancer free, and at the encouragement of his doctor, we decided to take the analytics program I created and put it into an app that could be accessed by anyone. The lessons we learned through 6 rounds of R-CHOP in the summer of 2013 needed to be shared with others dealing with cancer. And we were committed to making our program available for free.
After consulting with digital experts and healthcare professionals, I quit my full-time job, took money from our savings, and built a PROs system called chemoWave.3 After years of studying the technology options, hiring consultants, talking to researchers, and learning to comply with the Health Insurance Portability and Accountability Act, we are now harnessing the power of patient engagement and how they can drive better care using their own individualized information.
New Type of Precision Medicine
Today, our free app has gone through multiple upgrades and is now helping thousands of people. We’ve partnered with patient support groups such as the Look Good Feel Better Foundation and the CaringBridge non profit social network, and we have a resource collaboration with Cancer.net from the American Society of Clinical Oncology.4 We are working with major cancer hospitals to provide real-time, actionable chemoWave data to doctors and valuable aggregated/de-identified data to researchers. Our technology solution is less about the cancer diagnosis and more about identifying what makes each patient unique. An individual’s DNA is important, but so are psychosocial factors, their support system, their activities, and lifestyle.
Technology advances have prompted patients to demand this more immediate give-and-take with their doctor. Cancer patients are currently not equipped to be active participants in their care, and many tell us they feel like guinea pigs relegated to deal with cancer’s side effects on their own. They feel like they must put their heads down and endure it until their next face-to-face appointment with their doctor. But the more patients can get timely and accurate data to their healthcare team, the more likely the doctor can adjust treatment to significantly reduce or avoid side effects.
Today, chemoWave has learned much from the thousands of patients using our technology in all 50 states, representing 70 plus types of cancers.3 Some users have said, “This is the first time I understand what’s going on with my body and my emotions,” and “I am motivated to get up and do more by seeing how closely tied my activity levels are to feeling better.” chemoWave is equipping patients and their caregivers with personal data-driven insights to better manage the physical and emotional rollercoaster of chemotherapy. And doctors who are treating patients using chemoWave are telling us that chemoWave has helped to improve their communication and made them feel more connected outside the office visit. This personal, real-time information on patient experiences means doctors can be more confident about their choices and spend less time on trial-and-error strategies.
chemoWave’s timely and specific data, and its system of ongoing data collection represent an underutilized trove of information not represented in the literature. Technology has revolutionized many industries, and it should be used to update patient protocols and their reactions to standardized healthcare. It is time for patients to have more control over what is prescribed to them and technologies like chemoWave are giving them that power.