March 5, 2024 – Wednesday, January 31, 2024 marked the final day of the Eczema Counts project. This innovative project was run as a 50/50 partnership between the National Eczema Association (NEA) and PeDRA to educate and connect patients and researchers with the goal of advancing patient centered outcomes research (PCOR) and comparative effectiveness research (CER) in the field of pediatric eczema. The project was funded by an Engagement Award from the Patient-Centered Outcomes Research Institute (PCORI).
Eczema Counts included two phases – the first was a series of three online games that led more than 300 participants through a series of challenges in pursuit of valuable knowledge while also having the chance to win some great prizes. Along the way, participants completed more than 240 game challenges and earned dozens of prizes. Rising to the top of the leaderboard, martina19 and ITchgrl earned the most overall points in the researcher and patient categories, respectively, with each receiving a PlayStation 5 game console or gift card of equivalent value.
The second phase of Eczema Counts focused on in-person engagement and the identification of a high priority patient-centered research question that can be operationalized as an actual project in the near future. A group of patients convened during a breakout session at the NEA Eczema Expo in June 2023 to generate a list of high-priority patient centered research questions, which went on to be prioritized and refined for implementation five months later at the PeDRA Annual Conference in November.
Through Eczema Counts, NEA and PeDRA demonstrated the power of gamification to educate and equip a diverse audience to engage in PCOR and CER and have the tangible outcome of a high-priority research question to move forward. They also established a template for education and engagement that can be used by other patient and researcher communities to make similar progress in other disease states.
Interested in learning more about Eczema Counts?
Listen to a conversation between project leaders discussing the project and its outcomes on a special podcast “How We Made it Count – A Reflection on the Eczema Counts Project” or visit www.eczema-counts.org any time.
For more information on the PCORI Engagement Award:
Visit https://www.pcori.org/research-results/2021/making-it-count-using-gamification-enhance-childhood-eczema-pcor-and-cer. This project and the other projects approved for funding by the PCORI Engagement Award Program were selected through a highly competitive review process in which applications were assessed for their ability to meet PCORI’s engagement goals and objectives, as well as program criteria.
About the National Eczema Association (NEA)
Founded in 1988, NEA is the largest, 501(c)(3) non-profit, US patient advocacy organization serving people affected by eczema. NEA is the driving force for an eczema community fueled by knowledge, strengthened through collective action and propelled by the promise for a better future. For more on NEA, visit https://nationaleczema.org.
About the Pediatric Dermatology Research Alliance (PeDRA)
Formed in 2012, the Pediatric Dermatology Research Alliance (PeDRA) is a 501(c)(3) non-profit research organization that includes more than 700 members and supports vibrant research and educational programs. PeDRA’s mission is to create, inspire, and sustain research to prevent, treat, and cure childhood skin disease. For more on PeDRA, visit https://pedraresearch.org.
