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This episode explores the compelling reasons why patient voices should be elevated and amplified within the healthcare system, including medical conferences and innovation.

* Traditionally, healthcare conferences feature speakers with academic, business, or medical expertise. However, the most impactful stories often come from patients themselves.

* Patients offer a unique perspective, as they have firsthand experience with illness, injury, and the complexities of navigating the healthcare system.

* They can provide intimate, humanizing insights that resonate with audiences on a deeper level than abstract concepts or data.

* Patients understand the healthcare system from the "inside," revealing what truly works (and doesn't) from a lived experience perspective.

Beyond conferences, patient voices are essential in driving healthcare innovation and improving the patient experience.

* Patients are experts in their own health journeys, possessing invaluable knowledge about their bodies, symptoms, and treatment responses.

* Healthcare professionals should actively listen to patients, valuing their insights and integrating them into the decision-making process.

* Collaboration between patients and healthcare providers is key to developing patient-centric solutions that address real needs and improve outcomes.

* Including patients in research and development can lead to more effective and user-friendly tools and technologies.

* Empowering patients to be active participants in their care leads to greater satisfaction and better health outcomes.

Key takeaways:

* Inviting patient speakers to conferences brings a crucial balance to expert perspectives, reminding everyone why healthcare matters and who it ultimately serves.

* Embracing patient voices in innovation can lead to the development of truly patient-centric solutions that improve lives.

* Healthcare systems must shift away from paternalistic models and embrace patient empowerment as a core value.

Featured guest:

* Roi Shternin: A patient advocate, speaker, and social entrepreneur dedicated to empowering patients. He founded The Patient School to educate people about invisible illnesses and mental health issues. Roi shares his powerful story of resilience and determination, motivating audiences to overcome stigma and take control of their well-being. He advocates for a healthcare system that is accessible, compassionate, and truly patient-centered.

Hey Chronically crew! I'm back from a healthcare conference buzzing with talk about AI and the future of health data.But amidst all the flashy promises, something important is missing from the conversation: patient ownership. And it's making me mad. 😠

The Wild West of Wellness Data:

The world of consumer health tech is exploding. We're buying fancy fitness trackers, smartwatches, and health apps left and right. We're shelling out hundreds for the privilege of tracking our own heartbeats, sleep patterns, and menstrual cycles. And then... we're paying again for subscriptions to analyze this data?

But here's the kicker: this data isn't just sitting on a server somewhere. It's being sold. Your most personal health information is becoming a commodity, traded behind the scenes while you're left footing the bill.

Time for a Revolution:

I'm here to say enough is enough. It's time to flip the script on health data ownership. Why should we be paying companies to access and analyze information that belongs to us?

Instead, companies should be paying us for the valuable insights our data provides. Just like pharma companies compensate patients for their experiences, tech companies should recognize the gold mine of information we generate.

A Call to Action:

Next time you're tempted by a shiny new health tracker, take a closer look at the terms and conditions. Do you really want to pay for the privilege of having your data monetized? Let's demand more transparency and fairer practices.

I'm not saying we should ditch wearables altogether (I'm a huge fan!). But let's push for a future where patients are empowered partners, not passive data sources.

Remember: Your health data is yours. It's time to claim what's rightfully yours.

Until next time, stay chronically awesome!

Read more in my Book “What Do Patients Want?