Home Grown Innovations
What drives innovation? Is it random or serendipitous; an apple dropping on Isaac Newton’s head? Does it come in a moment of enlightenment after deep meditation or reflection? If you are person suffering with a medical condition that is poorly addressed by treatment options—or the family member of one—innovation comes from a much darker place. It happens following a period of despair or desperation. It happens in the middle of the night when you are awake with a sick child or after the experience of enduring a prolonged period of suffering. While less upbeat, we believe this type of innovation is incredibly valuable and holds great promise for patients.
We are 3 innovators impacted by severe eczema who are experimenting with solutions identified through the experience of living close to the disease. Eczema is common in childhood (1 in 5 children have the condition),1,2 but severe eczema is relatively rare, and for those that experience this harder to manage form of the condition, the itch and discomfort rule their waking (and sleeping) hours. Though eczema has been defined for over 200 years, it remains essentially an enigma. A recent journal article3 noted that, “In spite of thousands of clinical and experimental studies, the disease commonly referred to as atopic dermatitis (eczema) remains mysterious. The terminology is questionable, the definition is elusive, clinical criteria are evolving…The etiology is unknown…” This is a disturbing statement for families struggling day-to-day to keep eczema at bay.
The unknown surrounding the condition can make it feel like a curse. Why does it appear without warning? What causes it? What will make it go away? In the darkest periods, the inability to provide answers to these questions makes patients and their family members feel helpless and hopeless. But it can also lead to a kind of restless search for answers—a search that sometimes leads to innovation.
In the technology innovation field, “user-centered” design is all the buzz. It is defined as designing a new tool or resource with feedback from the person who will ultimately use it. But patient-led design takes this idea even further: Innovations are not informed by input from patients and caregivers; they are conceived of and designed by them.
We are 3 family members of patients with moderate to severe eczema; 2 parents and a sibling. Our own difficult experiences watching loved ones suffer led us down this path. We each developed new ideas for improving the quality of life of patients with eczema, and our stories, described in more detail below, highlight how patients and caregivers can serve as innovators and partners in the collaborative effort to find better solutions and approaches to medical conditions with suboptimal treatment and management options.
Mild or seasonal eczema has been part of my family for generations; however, nothing prepared me for the severe levels my son experienced when he turned 3. Although he was diagnosed with food allergies and eczema as an infant and received many tests, the skin, blood, and patch tests never provided clarity as to his triggers—and his symptoms worsened. Shortly after his third birthday, we were left feeling completely helpless and desperately trying to figure out the reasons behind his full body eczema flare-ups. With so many potential triggers—food, temperature changes, detergents, pets—it was near impossible to pinpoint the culprit using intuition or observation alone.
At around the same time, I also had a newborn baby girl who was developing full body eczema at 6 months. I did not want her to go down the same path as my son. At that point, I started to keep track of all potential triggers that could be worsening his eczema in an Excel file. I did this for months, eventually for years using trend and time series analysis, and over time started seeing trends in his flare-ups. I took the information I had collected to his immunologist and dermatologist, who were finally able to provide insights into what might be worsening his eczema symptoms post-infancy.
My primary goal of collecting this data was to get my son’s eczema under control. However, in the process, I realized that there was a critical need for a tool to help eczema patients, and parents particularly, identify patterns in eczema flare-ups. My own effort to understand my son’s eczema took years, but I hoped that with the help of technology, a quicker method could be developed for other parents and patients with uncontrolled, more severe eczema. So I created Eczema Tracker (http://eczematracker.com), an app that helps users manage their eczema by finding trends in their data. Eczema Tracker simplifies the method of data collection by automatically collecting environmental trigger data, when available, and using that as part of the data analysis, which is what I had done manually in my son’s case.
At one point, the mystery of this disease and the triggers that made it worsen were larger contributors to my stress than the rash itself because we never knew what might cause his eczema to flare-up on any given day, which meant that anything could. With Eczema Tracker, I hope to help others solve some of the mystery using a scientific- and data-driven approach and technology.
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