How to start a Patient Community

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'd like to discuss this with other subscribers or get access to bonus episodes, visit roishternin.com/subscribe

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

Living with chronic illness while pursuing a career can feel like an overwhelming challenge. As someone who has walked this path, I understand the unique hurdles you face. That's why I've created resources to help you thrive, both personally and professionally.In this podcast episode, we dive into:* The Emotional Empowerment Map: A powerful tool I developed from my 18-year journey with chronic illness. This map helps you understand and navigate the four emotional stages of chronic illness, allowing you to move forward with confidence.* The Elation Program: Our comprehensive 3-month program designed to realign your confidence and career path. It includes coaching, masterclasses, and practical tools to help you shine in your career while managing your health.Remember, you don't have to choose between your well-being and your professional aspirations. It's possible to create a fulfilling career that aligns with your body's needs.Want to learn more? Download your free Emotional Empowerment Map Guide at michelleirving.com.au/map or explore the Elation Program at careerandchronicillness.com/elation.Your journey to career empowerment starts now. Let's take this step together. This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit chronicallyhealth.substack.com Thank you for subscribing. Leave a comment or share this episode. 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

From a cancer researcher to a startup executive and all the way to starting er own Patient community about Inflammation based conditions. Dr. Natasha Punia and I are delving into a personal conversation about stigma, life with a chronic illness, being a chronic entrepreneur and channeling our pain into empowering others.Her community: https://inflammed.substack.com/ This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit chronicallyhealth.substack.com Thank you for subscribing. Leave a comment or share this episode. 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

I had the absolute pleasure to host Ursula Mann, a dear friend and colleague who served in senior patient engagement positions in big pharma for many years, to discuss bringing the voice of patients into industry decision-making, technology assessment, and more.Nowadays, Ursula is leading an organisation aimed at bringing patients' voices to the decision-making table. Learn more about it here and sign up if you wish to have the opportunity to share your insights as a patient.https://patientvoicepartners.com/ This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit chronicallyhealth.substack.com Thank you for subscribing. Leave a comment or share this episode. 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

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

From a Flawed Hero to a Healing Soul: A New Journey BeginsFirst, a heartfelt thank you. Your support throughout my initial journey has been a source of immense strength. You listened as I battled a mysterious illness, cheering me on as I faced the healthcare system.However, that story wasn't the whole picture. It painted me as a valiant warrior, but the truth is, I'm human. The experience left its mark, and it's time I address the mental scars, the PTSD I've been carrying.That's why I'm embarking on a new journey – a journey towards healing. This time, I'll be honest, vulnerable, and open about the challenges faced by those serving on the frontlines.Will you join me?This next chapter will be raw, unfiltered, and focused on growth. If you're interested in following along, stay tuned!https://roishternin.substack.com/Get My book here: https://books2read.com/ap/nOkrbo/Roi-ShterninSupport this podcast at — https://redcircle.com/revolution-from-your-bed/donations 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

Struggling with chronic illness and want to pursue higher education? This week's bite-sized episode tackles the challenges of online learning for those with chronic conditions.We explore the limitations of traditional online programs and discuss a potential solution:Hybrid model: Core courses delivered through MOOC platforms (Coursera, edX)Local cohorts: Build community and collaboration through in-person meetups at co-working spaces.This is just the beginning! We want to hear your thoughts. What can we do to make education more accessible for people with chronic illness?Leave a comment and let's start a conversation!#chronicillness #education #highereducation #accessibility #onlinelearningGet My book here: https://books2read.com/ap/nOkrbo/Roi-ShterninSupport this podcast at — https://redcircle.com/revolution-from-your-bed/donations 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

Unleash your inner speaker from the comfort of your own home! In this episode of Revolution From Your Bed with Roi Shternin, Roi dives deep into his experiences as a public speaker, sharing invaluable lessons learned that will transform you into a confident and captivating speaker. Whether you're facing a small audience or a packed auditorium, Roi's insights will equip you with the tools and techniques to captivate your listeners, conquer your fear, and deliver impactful presentations that will leave a lasting impression. Tune in and discover:** Powerful stage presence secrets** to radiate confidence and command attention.Content creation strategies to craft presentations that resonate with your audience.Overcoming public speaking jitters with practical techniques to manage performance anxiety.Tips for effective storytelling to weave captivating narratives that connect with your listeners.Bonus: Behind-the-scenes secrets and untold stories from Roi's public speaking journey.This episode is a must-listen for anyone who wants to elevate their public speaking skills and become a more impactful communicator. Don't miss out on this opportunity to learn from a master himself!My Books: https://books2read.com/ap/nOkrbo/Roi-ShterninMy Go to Digital Marketing Agency: https://alttag.digital/kontakt/Get My book here: https://books2read.com/ap/nOkrbo/Roi-ShterninSupport this podcast at — https://redcircle.com/revolution-from-your-bed/donations 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