What Doctors Don’t See Could Hurt You: Reclaiming Your Story in the Healthcare System

In this powerful episode of Desperate for a Diagnosis, host Laura Nozicka is joined by Irene Woerner and Paul Evans for a deeply insightful conversation about one of the most overlooked threats to patient care: fragmented, incomplete, and inaccessible medical data.

What happens when your doctor doesn’t have the full picture? The consequences can be devastating—misdiagnoses, adverse drug interactions, delayed treatments, and even medical errors that could’ve been prevented with the right information at the right time.

Irene, a former NASA software innovator, and Paul, a longtime healthcare researcher, bring both technical expertise and personal compassion to the conversation. They shine a light on what’s broken in the healthcare data system and what patients can do to take control of their own health narratives.

Together, we explore:

• Why you should own your health data—and what that really means

• The impact of data gaps on diagnosis, treatment, and medical safety

• How patients unknowingly lose control of their health information

• What it takes to track, protect, and share your records with the right people

• How new technologies (like AI and blockchain) can actually work for patients

• What happens when health systems are legally liable for your privacy—and why that matters

• What it means to build a “digital twin” of your health story to support continuity of care

• Real-life stories of patients and families navigating this confusing system

Whether you're managing a chronic illness, caring for a loved one, or simply trying to be proactive about your health, this episode offers both a wake-up call and a toolkit for becoming your own most powerful advocate.

Key Takeaways:

• You shouldn’t have to repeat your story at every appointment—your records should move with you.

• Healthcare providers often work with partial information, increasing your risk of harm.

• Most patients don’t know who has access to their data—or how it’s being used.

• You deserve transparency, ownership, and agency over your health journey.

• Empowering yourself with your own data is one of the most protective actions you can take.

Don’t forget to subscribe, rate, and share the podcast—especially with someone who’s navigating the system and deserves to feel seen and heard.

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Website: www.desperateforadiagnosis.com

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