Eczema Counts: Patients + Researchers = Better Outcomes for All
Pediatric eczema is a complex disease with a growing list of treatment options. It is also a disease that affects everyone differently, and what works for one patient might not work for another. The patient perspective is a critical component of eczema research that fosters new understandings in treatment effectiveness and improves long-term health outcomes.
The National Eczema Association (NEA) joined forces with the Pediatric Dermatology Research Alliance (PeDRA) to create Eczema Counts, a series of games and activities to engage patients, families, and researchers together in learning about patient-centered research in pediatric eczema. Over the course of 8 successive games, participants will grow their knowledge and compete against one another, all toward the goal of advancing pediatric eczema care. The first game, which launched in July 2022, establishes the basics about what the eczema research process entails and how that research can translate to real-world applications. The second game, which emphasizes the importance of conducting patient-centered outcomes research, is scheduled to launch in October.
The Dermatologist recently met with Wendy Smith Begolka, MBS, NEA’s senior vice president of scientific and clinical affairs, and Michael Siegel, PhD, executive director of PeDRA, to find out more about Eczema Counts.
The Dermatologist: Can you start by giving us an overview of the Eczema Counts game and specifically what you would like to highlight about the game?
Wendy Smith Begolka: Eczema Counts is grounded in the concept of building bridges. We think the more patients know about how research works, the more motivated they will be to share their voice. And the more researchers incorporate patients’ experiences in their work, the more likely it will revolutionize eczema care.
When you build an actual bridge, you build both sides of the bridge at the same time, and then connect them. In many ways, NEA and PeDRA have been modelling this path from the very beginning; everything we do for Eczema Counts, we are doing in a true 50/50 partnership. Now through the games of Eczema Counts, patients, caregivers, and researchers will follow suit and grow their knowledge and skills in parallel tracks, learning the same things at the same time in a way that emphasizes the importance of both sides of the bridge being equally strong. Over the 2 years of our Eugene Washington Patient-Centered Outcomes Research Institute (PCORI) Engagement Award, we will also work to find different ways to span the bridge, fostering these connections and building new partnerships.
The eczema treatment landscape is evolving rapidly, but we know that clinical trials do not answer every clinical research question or the more practical questions patients and caregivers often have, nor can they address the heterogeneity of eczema. There is so much opportunity right now to make a difference.
Michael Siegel: PeDRA and NEA are very excited to have received the engagement award from PCORI to better educate both researchers and patients around patient-centered outcomes research, comparative effectiveness research, and emerging therapies for the treatment of pediatric eczema. NEA and PeDRA have worked closely and in partnership for many years. Since 2020, we have partnered on an annual cofunded grant called the Childhood Eczema Challenge grant, and this engagement award was just a natural evolution of our healthy partnership.
The landscape for eczema therapies is getting very complex, very quickly, which is a good thing, but it can also be overwhelming for both health care providers and parents and patients. When you factor in pediatric eczema, you have a potentially more complex and different landscape where there might be fewer on-label treatment options, more concern around long-term treatment and adverse reactions, and less data to inform decisions. We really want to be ahead of that whole environment as it evolves as best we can.
The approach we decided to take through the engagement award is to launch an 8-part educational game called Eczema Counts, which is designed to educate both patients and researchers around what it means to conduct collaborative research. It is collaborative in the sense of involving both patient and research perspectives. How do we identify important questions? How do we drive research in an efficient way that does what patients ultimately want and informs the shared health care decision-making process? The first game launched in July and ended in August. The basis for Game 1 is all about patient-centered outcomes research, giving people from the patient and researcher communities a foundation to then go on to take the steps that we are hoping to take with the subsequent games.
The gamification strategy is something we think is exciting and has a lot of potential. The idea is to boil down the educational content, however complex or obscure and however unfamiliar somebody might be with it. We frame that to an audience through a fun game. You are reading, learning, and answering questions, but ultimately you are winning points, earning badges, and getting on a leaderboard. You are part of a community playing the game, competing in a fun way, and getting some cool prizes while also learning something valuable that can ultimately improve patients’ lives.
The Dermatologist: With October being Eczema Awareness Month, how do you see Eczema Counts raising awareness for patients and their families?
Michael Siegel: We are launching the second game in October, which is going to be about why people should be conducting patient-centered outcomes research and have more of a focus on eczema. If you are looking to become part of an exciting, vibrant community while expanding your knowledge and your ability to impact research for whatever stakeholder community you come from, keep an eye out at the end of October. Game 2 will run for about a month just like Game 1 did, and it is going to be additionally exciting because it will include an in-person component at the 2022 PeDRA Annual Conference in Bethesda,MD, November 3 to 5.
This is just the beginning of our 2-year project. The first year is going to be a lot of online question answering, getting points, being part of an online discussion board, and doing virtual challenges. In the second year, we are going to have a lot more in-person or real-world activities built in. How do you build on what you have learned through the first year of the games to take steps toward tangible research in the near future?
Wendy Smith Begolka: Eczema Awareness Month for NEA this year is going to be all about leaning in and looking at eczema from all angles, so to speak—from far away, across the room, and up close. Each of these ways of looking at eczema can generate discussion and create research questions. And each of these angles can involve a different type of patient-centricity. Far away might be something related to the eczema community as a whole, across the room might be about a particular group of individuals who share a characteristic, and up close might be a unique patient experience. For everyone who participates in Eczema Counts, patients, caregivers, and researchers alike, it is an opportunity to broaden, add, and maybe even challenge some perspectives. Awareness is only the first step, what we are striving for is awareness and action.
Importantly, Eczema Counts is already engaging members of NEA’s Ambassador Program, and our research ambassadors specifically. This amazing group of individuals are committed to advancing eczema research and have volunteered to contribute to different research activities, including Eczema Counts. We are hoping that their examples and efforts are an inspiration for others to sign up to be an ambassador, as well as play Eczema Counts.
The Dermatologist: Can you elaborate on the in-person component of the game that you are planning in addition to the virtual component?
Michael Siegel: We are still going to be prioritizing the virtual basis for the game, but we are planning to add challenges to the game that can be satisfied through in-person action. Right now, if you go through Game 1, you would be reading, answering questions, and doing things to get bonus points, such as teaching somebody in your social media friend’s circle a new concept about eczema treatments or patient-centered outcomes research, or finding a piece of information online to answer questions. But if you are at the PeDRA Annual Conference, you can do something in person there to find the answer. We may add a scavenger hunt component for anybody who is physically at the conference, while also taking care to allow people who cannot make it to the conference to still be able to play the game, earn points, and then hopefully look ahead to being able to do something in person in the future.
Wendy Smith Begolka: Our first in-person activity is coming up at the PeDRA Annual Conference, which is exciting, but we also have plans for those who will be attending virtually to earn points and be as engaged as possible. Year 2 of Eczema Counts will have activities at NEA’s Eczema Expo as well, possibly focused on putting all the new knowledge and skills learned through Eczema Counts to the test. It may be a bit more “show what you know” but still in a fun way. Stay tuned or better yet, sign up.
The Dermatologist: Is there anything else you would like to share about Eczema Counts or future plans?
Wendy Smith Begolka: One of the things that both NEA and Pe-DRA are excited about is the opportunity to learn right alongside game participants. Both of our organizations have used games for our conferences before, but Eczema Counts is trying out something completely new to advance patient-centered outcomes research. It has been fun to see such a diverse group of individuals get involved, getting a little competitive and learning all at the same time. We have only begun and yet we are already seeing amazing potential for the future.
Michael Siegel: It is hard to reach children directly, so we thought it would be cool through the game to motivate participants to teach their child, for example, about something, or teach a teenager about something. And similarly on the research side, for an investigator to teach a resident, or a student, or somebody else a new concept. It is helping participants amass knowledge, solidify what they have learned, and spread that to others.
For us at PeDRA, we have done games at our last few conferences. It is amazing. You see the chair of a department playing right alongside students. There is such a broad audience. Everyone likes playing. You get into it. You have fun. Together, PeDRA and NEA realized that a program such as Eczema Counts could reach a very broad audience, from patients and parents to department chairs and students. We cannot wait for the next 7 games.
Game 1 ended on August 30, 2022. Participants may continue to play Game 1 to learn more about the basics to set them up for success in future games and earn points on the all-time points leaderboard. Game 2 will launch in late October. Visit https://eczema-counts.org for more information.
