Komodo's north star is to reduce the burden of disease, and as we put our mission into action, the patient perspective is front and center. This year at Komodo Week – a company-wide event that brings together our entire team of Dragons to connect, strategize, and align – we hosted a panel discussion featuring some of the most visionary patient advocates we know. Hearing directly from the patient’s perspective is important for our work because, as one of our panelists reminded us, “Unless you’ve been in that chemotherapy chair, or held the hand of a loved one as they have the treatment pumped through their bodies, you have no idea what they go through.”

Patients face a barrage of challenges when navigating their way through a diagnosis. What leading-edge treatment options are available? Where can they find the most experienced and specialized clinicians for their disease? What resources are available to help them grapple with a diagnosis and sort through life-changing healthcare decisions? There are many more questions, and the answers are usually multifaceted, nuanced, and complex. It would be unreasonable to suggest that all the answers can be found in one place — but our advocacy colleagues agree that patient-centric data is critical to addressing these challenges. 

A cancer survivor, rare disease caregiver, patient advocate, and consultant, Stacy Hurt shared her personal experience of using data to make pivotal care decisions for herself and her family. She told us, “I have literally made life-and-death decisions based on the data that I have available to me,” and reminded us that while data can and should be used in aggregate to inform care decisions for populations of patients, the data ultimately belongs to the individual — and they must have a voice in how that data is used. 

Echoing Stacy’s sentiment, Anjee Davis, President of Fight CRC recognizes the importance of data in empowering not just patients individually, but patient advocates and organizations globally. In her role as leader of the largest colorectal cancer advocacy organization in the nation, she relies on access to data-driven insights to provide evidence to policy makers and governing bodies in order to enact change. Advocacy organizations like Fight CRC play a vital role in connecting data to all the players in a patient’s healthcare journey — the provider, the hospital, payers, academic centers, and governments — to inform policies, screenings, treatment, and care decisions. 

Perhaps nowhere is the need for data and insight more pressing than in rare diseases. Stacie Lindsey, Founder and CEO of the Cholangiocarcinoma Foundation, told us, “One of the first questions patients ask us is, 'Where can I see a specialist?' If the patients have access to aggregate, de-identified data then they can get the care that they need.” With 8,000 new cholangiocarcinoma diagnoses per year, she underscored the importance of incorporating real-world data to extract meaningful insights that have the potential to save lives, especially in under-researched disease states. She shared how her foundation’s partnership with Komodo has provided crucial data points, previously unavailable to patients and their caregivers, that improved the patient journey from diagnosis to treatment. 

Although data doesn’t address every need, it’s clear that 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, diagnose disease earlier, and accelerate research. 

Health technology solutions cannot be designed in a silo, and the voices, perspectives, and experiences of patients must inform the innovations we pursue to improve the healthcare system. The partners, advocates, leaders, and survivors who shared their perspectives at Komodo Week reminded us why we are here: to reduce the global burden of disease. And ultimately, to create a better experience for patients.

Read more about Komodo’s partnership with FightCRC in our latest analysis around .

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