We often feel like subjects in our own lives—navigated, tested, and surveyed. We all know that email that arrives after a medical appointment: "How did we do?" We fill out the survey, wondering if our patient feedback truly matters.

Today, let's reframe that question. Your feedback isn't just feedback; it's evidence. It's a crucial part of a growing field known as patient experience data, and it's the key to real patient empowerment.

Beyond the 1-10 Scale: What is Patient Data?

When we think of data, we think of lab results and pain scales. But the most vital patient-reported outcomes (PROs) go far beyond numbers. Real data is the full story of your quality of life. It’s the data point of a waiting room chair being too hard for your back pain. It's the data point of feeling rushed during a consultation. It's the data point of the relief you feel when a doctor finally validates your experience.

This qualitative data paints a picture that numbers alone cannot. It measures dignity, feasibility, and compassion within the healthcare system.

From Anecdote to Evidence: Driving Systemic Change

Your individual story is powerful, but when combined with hundreds of others, it becomes undeniable proof. This collective patient voice is what drives systemic change. It’s how patient advocacy groups can demonstrate the need for better communication protocols, more accessible clinic layouts, or a re-evaluation of a treatment's real-world side effects. Your experience helps build the business case for more compassionate and effective care.

Your Self-Advocacy Toolkit: Better Healthcare Communication

Improving the quality of patient experience data begins with us. True patient engagement means actively participating in our own care. Here are two simple strategies for effective self-advocacy:

* The 30-Second Debrief: After every appointment, take a moment to note one thing that went well and one thing that could have been better. This simple form of symptom tracking and experience logging builds a powerful evidence file over time, making your healthcare communication more precise.

* Translate Symptoms into Impact: This is key for shared decision-making. Instead of just saying, "My fatigue is bad," translate it into a functional data point. Say, "My fatigue is so severe that I must choose between taking a shower or making breakfast." This transforms a subjective feeling into a concrete piece of evidence about your quality of life.

Your journey with a chronic illness has made you an expert. By consciously documenting and communicating your experience, you shift from being a passive patient to an active research partner in your own care. Your experience is not a byproduct of your illness; it is the evidence that will build a better future for all of us.

Learn more about it in my book “What do Patients Want”.

In this episode, Roi Shternin chats with Linda, the inspiring force behind "The Mindful Migraine Blog."

Linda has battled chronic migraines for years, experiencing the debilitating effects that often left her bedridden. But a year ago, she embarked on a journey of self-healing, embracing mindfulness practices like meditation, yoga, and breathing exercises. The results? A dramatic reduction in migraines – from 3 days a week to just the occasional bad day!

Linda shares her insightful story, offering a beacon of hope for those struggling with chronic pain. You'll hear about the specific mindfulness techniques that helped her regain control, plus the inspiration to start your own healing journey.

Don't miss this episode if you're looking for real talk, expert tips, and a supportive community to help you manage your migraines and thrive!

Linda's Blog: https://themindfulmigraine.blog/

Welcome to our new podcast!

Our first guest, Natasha Punia, is an expert in the science of inflammation. Living with a chronic condition herself and leading a community helping patients deal with inflammation-based illnesses, we talked about acceptance, dealing with our surroundings, invisible illnesses, and life.

Join her community: https://inflammed.substack.com/

Join The Chronically tribe:

Tired of waiting for someone to go to the movies with? Don't! Discover the unexpected joy and freedom of going to the cinema alone. It's not lonely, it's liberating. Find out why a solo movie date might just be your new favorite thing.

Follow my Journey at roishternin.com

Living with a chronic illness is tough enough, but what about the invisible battles you're fighting up top? This NMU podcast dives into the often-overlooked connection between chronic physical conditions and your mental well-being. We're talking real talk about how managing a long-term illness can impact your mood, stress levels, and overall mental health. Tune in to learn why giving your mind some TLC is just as important as managing your physical symptoms, and discover practical tips for staying resilient.

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?