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.
Eczema Tracker
Navdeep Gosal
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 (https://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.
Article continues on page 2
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Global Parents for Eczema Research
Korey Capozza
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
Jeffrey Fung
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.
Article continues on page 3
{{pagebreak}}
Innovations for and by Patients—What’s Next?
Each of our new ideas was borne out of the emotional distress of living with a loved one with eczema—an experience that affords a unique understanding of the specific problems encountered by patients. Other disease areas and conditions have benefited from patient-led innovation, such as cystic fibrosis, anaphylaxis, and diabetes. For example, a mother of a child with cystic fibrosis helped invent the electronic percussor and a patient with severe allergies came up with a better design for the epinephrine injector. Indeed, a recent survey of 263 patients found that more than half said they had developed and used a novel solution to improve management of their diseases.4 Recognizing the potential of this untapped knowledge, researchers at the University of Lisbon created a global community and online exchange to help identify and share innovations developed by patients: https://patient-innovation.com/.
This is a hopeful development that holds the potential to disseminate helpful innovations to patients worldwide. For those of us still searching for better options for children with moderate to severe eczema, we still have work to do. Of the 662 posts included in the “patient innovation” database, not one relates to eczema, let alone severe eczema. For a condition with few effective treatment options, innovation of all kinds is sorely needed. A renewed focus on patient-partnered solutions could lead the way to new treatment and management ideas for patients and families—and that type of open collaboration would in itself be innovative.
Ms Gosal is founder and developer of Eczema Tracker, and can be reached at navdeep.gosal@gmail.com.
Ms Capozza is founder and director of Global Parents for Eczema Research, and can be reached at parents4eczemaresearch@gmail.com.
Mr Fung is creator of DermaChill, and can be reached at dermachillinfo@gmail.com.
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.
Eczema Tracker
Navdeep Gosal
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 (https://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.
Article continues on page 2
{{pagebreak}}
Global Parents for Eczema Research
Korey Capozza
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
Jeffrey Fung
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.
Article continues on page 3
{{pagebreak}}
Innovations for and by Patients—What’s Next?
Each of our new ideas was borne out of the emotional distress of living with a loved one with eczema—an experience that affords a unique understanding of the specific problems encountered by patients. Other disease areas and conditions have benefited from patient-led innovation, such as cystic fibrosis, anaphylaxis, and diabetes. For example, a mother of a child with cystic fibrosis helped invent the electronic percussor and a patient with severe allergies came up with a better design for the epinephrine injector. Indeed, a recent survey of 263 patients found that more than half said they had developed and used a novel solution to improve management of their diseases.4 Recognizing the potential of this untapped knowledge, researchers at the University of Lisbon created a global community and online exchange to help identify and share innovations developed by patients: https://patient-innovation.com/.
This is a hopeful development that holds the potential to disseminate helpful innovations to patients worldwide. For those of us still searching for better options for children with moderate to severe eczema, we still have work to do. Of the 662 posts included in the “patient innovation” database, not one relates to eczema, let alone severe eczema. For a condition with few effective treatment options, innovation of all kinds is sorely needed. A renewed focus on patient-partnered solutions could lead the way to new treatment and management ideas for patients and families—and that type of open collaboration would in itself be innovative.
Ms Gosal is founder and developer of Eczema Tracker, and can be reached at navdeep.gosal@gmail.com.
Ms Capozza is founder and director of Global Parents for Eczema Research, and can be reached at parents4eczemaresearch@gmail.com.
Mr Fung is creator of DermaChill, and can be reached at dermachillinfo@gmail.com.
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.
Eczema Tracker
Navdeep Gosal
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 (https://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.
Article continues on page 2
{{pagebreak}}
Global Parents for Eczema Research
Korey Capozza
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
Jeffrey Fung
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.
Article continues on page 3
{{pagebreak}}
Innovations for and by Patients—What’s Next?
Each of our new ideas was borne out of the emotional distress of living with a loved one with eczema—an experience that affords a unique understanding of the specific problems encountered by patients. Other disease areas and conditions have benefited from patient-led innovation, such as cystic fibrosis, anaphylaxis, and diabetes. For example, a mother of a child with cystic fibrosis helped invent the electronic percussor and a patient with severe allergies came up with a better design for the epinephrine injector. Indeed, a recent survey of 263 patients found that more than half said they had developed and used a novel solution to improve management of their diseases.4 Recognizing the potential of this untapped knowledge, researchers at the University of Lisbon created a global community and online exchange to help identify and share innovations developed by patients: https://patient-innovation.com/.
This is a hopeful development that holds the potential to disseminate helpful innovations to patients worldwide. For those of us still searching for better options for children with moderate to severe eczema, we still have work to do. Of the 662 posts included in the “patient innovation” database, not one relates to eczema, let alone severe eczema. For a condition with few effective treatment options, innovation of all kinds is sorely needed. A renewed focus on patient-partnered solutions could lead the way to new treatment and management ideas for patients and families—and that type of open collaboration would in itself be innovative.
Ms Gosal is founder and developer of Eczema Tracker, and can be reached at navdeep.gosal@gmail.com.
Ms Capozza is founder and director of Global Parents for Eczema Research, and can be reached at parents4eczemaresearch@gmail.com.
Mr Fung is creator of DermaChill, and can be reached at dermachillinfo@gmail.com.
