Home Grown Innovations
Global Parents for Eczema Research
As a parent of a young child with severe eczema, it was difficult to watch the treatments that were “supposed to work” fail my son. At times it seemed like each doctor we visited had different advice. One would tell us to stop bathing our son; the next would tell us to bath daily. We wondered about the long-term consequences of many of the treatments we tried, especially when administered to such a young child. Yet, when we looked for answers in the research literature, we could find very little objective information to guide our decisions. Friends, family, and strangers could see our son’s suffering and offered ideas that might help—many of which we tried out of desperation. But we had no idea if they would work. Global Parents for Eczema Research (www.parentsforeczemaresearch.org) grew out of this experience.
We saw a clear need for research that answers the pressing questions of highest relevance to patients and families: How often and how should I bathe my child with eczema? What is the right dose and duration of topical steroids for a child younger than 3 years? What are the long-term consequences of drugs that suppress the immune system? What is the best strategy for taming itch? We also saw a need for a forum where parents could share research findings, evidence-based information, and emerging approaches to managing eczema. In a climate of confusion and conflicting answers about treatment, we also wondered if other patients and families, all living with the condition and trying to find their own way forward by conducting their own battery of experiments, might have novel ideas that were unknown to the clinical community. We wondered how this knowledge could be shared more broadly?
Global Parents for Eczema Research, formed in 2015 with help from the Patient Centered Outcomes Research Institute, is a community of almost 900 parents from 17 countries. Last year we used social media and online surveys to systematically identify parent and patient research priorities. Using a workgroup structure, we then developed the top priorities into research questions. Now, we are reaching out to research partners with similar interests to bring the rigor of science to bear on these high priority topics. We also continually search the research literature for findings of relevance to patients and families and attend scientific meetings where such information is shared. We hope to offer a more immediate channel for dissemination of research to the community of families affected by moderate to severe eczema, and to facilitate a much-needed conversation between researchers and patients—a conversation that we hope will lead to a new era of collaboration and patient-centered research initiatives.
DermaChill: Coping With Itch
Some of my earliest memories of my sister are of her learning the piano with scarred fingers and bandaged hands. Instead of playing with flawless-skinned Barbies, she was occupied with more urgent concerns like learning to use an EpiPen, studying snacks at recess to determine if they would send her to the hospital, and figuring out how to concentrate in class despite the gnawing urge to scratch her skin. Our family searched for any possible solution to heal my sister’s skin. From acupuncture and Chinese herbal medicine to steroids and pills, these promises have fallen short.
The experience of helplessly watching my sister endure her experience stayed with me after I left home for college. As a student at University of California Santa Barbara, I had the opportunity to contemplate innovations that might help with the management of itch through an entrepreneurship program sponsored by the university. We learned to develop our innovations through patient-focused market research. With the help of faculty mentors and a small team of classmates, we explored how to improve upon an ice pack, an approach that has consistently offered her relief from itch. I wondered if we could improve upon the simple “ice pack” as a therapy for the itch associated with eczema.
Our project team started by interviewing over 80 patients with eczema and their caregivers about their experiences with eczema and effective remedies they used in controlling itch. We found that ice is a common therapy used by those suffering from chronic itch. However, there are key drawbacks to using an ice pack: it is not sterile, it dries out the skin, and is hard to access when patients are on the go or away from home. We developed a medical device (DermaChill) that utilizes cold—similar to an icepack—and is hygienic, compact, rechargeable, and available wherever and whenever itching occurs. The device is also simple to use: to eliminate itch, patients simply place the device on their skin.
We are in the process of testing our medical device with dermatologists, putting us one step closer to introducing this device to eczema patients internationally. Our purpose is to help eczema patients by giving them back control over their lives. As we continue to innovate, our focus will be on incorporating patient experiences to better alleviate suffering.
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