The Wild West of Wellness Data: Why Patient Ownership is the Next Revolution

taken from keynote at the Digital Health Ljubljana conference, we address the invisible crisis at the heart of the healthcare system.You are a reflective achiever, burdened by guilt for resting while navigating a health struggle or life transition. You are trapped between the person you were and the purposeful direction you can’t yet see. This keynote offers the ultimate permission you need to heal while pursuing your purpose: by shifting your perspective.Roi, The Human Advocate, challenges digital health leaders and listeners alike with one core question: Are we truly building patient-centric care, or are we simply using it as a slogan?.more at: roishternin.com

We talk a big game about "patient-centricity," but are we truly understanding what patients 𝗻𝗲𝗲𝗱 𝗮𝗻𝗱 𝘄𝗮𝗻𝘁 𝗮𝘀 𝗵𝘂𝗺𝗮𝗻 𝗯𝗲𝗶𝗻𝗴𝘀𝗜𝘁'𝘀 𝘁𝗶𝗺𝗲 𝘁𝗼 𝗺𝗼𝘃𝗲 𝗯𝗲𝘆𝗼𝗻𝗱 𝘁𝗿𝗮𝗻𝘀𝗮𝗰𝘁𝗶𝗼𝗻𝗮𝗹 𝗰𝗮𝗿𝗲 𝗮𝗻𝗱 𝗲𝗺𝗯𝗿𝗮𝗰𝗲 𝗮 𝘁𝗿𝘂𝗹𝘆 𝗽𝗮𝘁𝗶𝗲𝗻𝘁-𝗰𝗲𝗻𝘁𝗲𝗿𝗲𝗱 𝗮𝗽𝗽𝗿𝗼𝗮𝗰𝗵.More about me: roishtrernin.comMy book: https://tinyurl.com/54b999cw

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 ChangeYour 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 CommunicationImproving 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”.This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit roishternin.comThis is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit

In this high-impact episode, transcribed from a powerful address by Roi Shternin, we reveal a fundamental truth for the future of the MedTech industry. Speaking not as a CEO but as a patient who spent "almost a decade in bed, misdiagnosed," Roi argues that Vulnerability is a strategic asset for human-centered systems.This is a direct appeal to the Reflective Wounded Achiever audience who feels dismissed by the system, and a strategic guide for organizations seeking Undeniable Direction.We challenge the industry to move beyond regulatory boxes and recognize "lived experience" as the untapped goldmine of data. You will learn the business case, modeled by the pharmaceutical industry, that shows patient engagement leads to:Greater ROI and Better Market Access.Higher retention rates and reduced redesign needs.Roi provides Concrete Steps for MedTech companies to embed the patient voice, including establishing a Chief Patient Officer (CPO) and integrating Patient Experts in Residence directly into project teams.This episode balances Gentle Authority with Courageous Vulnerability, proving that developing solutions that are "humanistic at heart" is the only path for truly impactful innovation. The goal is clear: Let's change MedTech together.

Living with a chronic illness is tough enough, but what about the invisible battles you're fighting up top? This 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.More at: roishternin.com

Hey there, I am consolidating my podcast work under the new brand name “Sick Notes”. It’s the merging of “Chronically Speaking” and “Revolution From Your Bed.Thanks for supporting me in my journey and more to come,Roi This is a public episode. If you'd like to discuss this with other subscribers or get access to bonus episodes, visit roishternin.com/subscribe

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. Thank you for subscribing. Leave a comment or share this episode. This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit roishternin.substack.com

The Wild West of Wellness Data: Why Patient Ownership is the Next RevolutionReturning from a major healthcare conference, Roi Shternin, The Human Advocate1, cuts through the noise of AI promises to tackle an urgent ethical crisis: patient data ownership.This episode is a critical call to action for the Reflective Wounded Achiever who is paying to generate, track, and then subscribe to analyze their own health data—only to have it monetized behind the scenes. We expose the "Wild West of Wellness Data" and demand a fundamental shift in perspective.Drawing on the Human Advocate Blueprint™  Roi argues that the patient's "lived experience is the gold mine of data" and it's time to flip the script. Why should we be footing the bill for information that rightly belongs to us? Instead, tech companies must recognize the strategic value of patient insight and compensate us for the data that drives their innovation.Listen for guidance on:How to view your health data not as a commodity, but as your own valuable raw material5.The demand for a future where patients are empowered partners, not passive data sources.The need for transparency and fairer practices in consumer health tech.This is a powerful moment of Undeniable Direction , where we move from frustration to a purposeful demand for change.

Tired of feeling like you have to choose between your chronic illness and your career dreams? You don't have to. As a fellow professional who's navigated this exact path for 18 years, I get the overwhelming challenge. This episode is your guide to creating a fulfilling career that respects your body's needs.We dive deep into the strategies that will help you thrive:The Emotional Empowerment Map: Discover my proprietary tool for chronic illness. Learn to identify and confidently navigate the four emotional stages of your health journey, turning overwhelm into forward momentum.Introducing The Elation Program: Get the details on our comprehensive 3-month coaching program. We’ll realign your confidence and career path with masterclasses and practical tools so you can truly shine professionally while managing your well-being.Your career empowerment starts now.Ready to start thriving? Download your free Emotional Empowerment Map Guide at michelleirving.com.au/mapor explore the Elation Program at careerandchronicillness.com/elation.More about my work: roishternin.com

What happens when a cancer researcher becomes a patient? Find out in this powerful conversation with Dr. Natasha Punia, a former startup executive who channeled her health journey into founding her own patient community, Inflammed.This episode is a deeply personal dive into the realities of living and thriving with inflammation-based chronic illness. We tackle crucial topics for the chronic entrepreneur and patient community:The Stigma of Chronic Illness: Facing bias and misunderstanding in professional and personal life.The Chronic Entrepreneur: How to manage a demanding career while navigating health challenges.Channeling Pain into Power: The secret to transforming personal struggles into a platform for empowering others.If you're looking for inspiration on how to build a thriving life and business despite chronic health issues, this episode is a must-listen.Connect with Dr. Punia's community: https://inflammed.substack.com/