Nowhere does our mission — to reduce the burden of disease — come to light more than in our work with our advocacy partners. At this year’s Komodo Week, our company-wide event that brings together our entire team of Dragons to connect, strategize, and align, we hosted a moderated discussion featuring some of the most powerful examples of our mission and insights in action. Hearing from those who execute on the insights delivered from our Healthcare Map™ and leverage our analytics inspires and grounds us in the ambitious goal we’ve set forward. For those of us who sit in offices in front of computers, it’s empowering to hear the stories from our partners in the field.

With experience as broad as chemical engineering, user design, and business development, our panelists all shared a similar experience; data makes a difference.

Parents, activists, and innovators Amy Wood, Executive Director of the Raymond A. Wood Foundation, and Luciana Peixoto, Parent Advisor from the Systemic Juvenile Idiopathic Arthritis (JIA) Foundation, shared their stories of navigating both complex diseases and a complex health system to find treatment for their children.

Amy and her family struggled to find a viable solution to test salt levels after her son was diagnosed with a craniopharyngioma brain tumor. The Raymond A. Wood Foundation is breaking new ground by building an at-home salt monitor, similar to a glucose monitor for diabetes. To dive deeper into the unmet needs of these patients, they are leveraging Komodo’s data to better understand how and where this device may have the greatest impact.

Luciana and her family embarked on a continent-spanning journey to find treatment for her daughter’s systemic juvenile idiopathic arthritis. After a successful bone marrow treatment, her daughter is on the mend, and Luciana and the Systemic JIA Foundation are using Komodo’s data to build a tool so that other families have easier and ample access to the providers and treatments that could save lives.

Ultimately, more robust real-world evidence from patient journeys, social determinants of health, providers, and research institutions means that patients and their experiences are at the center of care. Sanaz Eftekhari, Chief of Business Development and VP of Research at the Asthma and Allergy Foundation of America (AAFA), shared her excitement for the future. "For the longest time, patients were just seen as the research subjects,” she said. “But even in the last 10 to15 years, I've seen a real shift to patients being more at the center of the circle. You’re looking at them as a partner early on if you're trying to decide what you’re going to study; if you’re trying to decide what symptoms you want to alleviate through therapies, what innovative treatments you want to look at, what translational research — you want to look at having patients at the table early on.” Using insights from Komodo’s Healthcare Map, the AAFA is working to build a more comprehensive understanding of how asthma patients are impacted by elements such as environmental factors, access to care, and provider behavior. 

Technology — in healthcare or elsewhere — cannot be designed in a silo. The voices, perspectives, and experiences of patients must inform the solutions we design in order to have the greatest impact. For us, access to and insights from the real-world experiences of patients is invaluable. We are grateful for the opportunity to partner with these advocates and others to help address gaps in care, accelerate research, and, ultimately, reduce the burden of disease.

Want to see more examples of Komodo’s mission in action? Check out last year’s panel featuring expert speakers from Fight Colorectal Cancer and the Cholangiocarcinoma Foundation.

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