In this episode

You’ll meet Deepak Shukla—a software engineer, yoga trainer, and Type 2 diabetes patient expert from India. Diagnosed at 25 with an HbA1c > 15, Deepak takes you from a rural diagnosis to life in Delhi, mapping the reality of care across India: long trips for insulin, limited primary care in villages, and the quiet power of WhatsApp and peer groups when formal systems fall short.
You’ll hear how patient communities fill the education and motivation gap, and what respectful, prevention-first, listening-led care would look like if we built it with patients, not just for them

Guest Bio

Deepak Shukla — Type 2 diabetes patient expert; software engineer based in Delhi; yoga and meditation practitioner; community speaker supporting diabetes education in India. Born in Jharkhand (rural India), diagnosed in 2019 at age 25. Active in patient peer networks and advocacy; passionate about prevention, mobility, and mental health in chronic-disease care.

Host: Helena Binder

Key Topics

• Rural vs. urban diabetes care: one physician, limited meds vs. multidisciplinary support
• Access realities: insulin storage without fridges, out-of-stock drugs, 200–400 km medicine trips
• Where patients actually learn: Google, Facebook groups, WhatsApp, and Coffee Connects
• Stigma and silence: why “Don’t tell anyone” hurts self-management
• Prevention over cure: routine check-ups, mobility (not “sport”), stress management, yoga
• What good looks like: doctors who listen first, explain the “why,” and co-plan next steps
• Mini-communities that motivate: peer stories turning numbers into action

What you need to know

If you design programs or medicines for diabetes—especially in growth markets—this conversation helps you see the operational gaps (supply, education, respect) and the human levers (motivation, peer support) you can actually influence.

About Merakoi

At Merakoi we see patients as co-creators, not numbers. Our mini-community model embeds diverse patient experts alongside life-science teams to shape trials, content and digital therapeutics from concept to launch. Ready to swap one-dimensional journey maps for stories that move hearts and markets? Let's chat!

In this episode

You’ll meet Stephanie A. Wynn—Crohn’s survivor, Certified Patient Leader, and author of Navigating IBD: A Six-Week Blueprint for Better Gut Health. Misdiagnosed six times and shaped by profound loss, Stephanie turned pain into purpose with the IBD Patient Navigator® Program, a culturally responsive model that helps underserved patients access care, understand options, and advocate with confidence.

If you work in pharma, research, or care delivery, you’ll hear exactly how to rebuild trust, use plain language that drives adherence, and invite patient experts into design from day one.

Guest Bio

Stephanie A. Wynn — Crohn’s disease survivor; founder, Stephanie A. Wynn Foundation; creator of the IBD Patient Navigator® Program; Certified Patient Leader; author of Navigating IBD. Her work bridges education, trust, and access for patients—especially in communities historically overlooked in GI care and research.

Key Topics

• Why mistrust persists—and practical steps to earn it back
• Plain-language communication as a predictor of adherence
• Patient navigators: closing the gap between clinics and real life
• “Clinical research” vs. “clinical trials”: words that open doors
• Representation in IBD research: gender and racial gaps that affect outcomes
• Financial access: patient assistance programs patients aren’t told about

What you need to know

If you design IBD pathways, studies, or support programs, this episode gives you a clear, human checklist: earn trust, speak plainly, offer options early, and invite navigators into the plan.

About Merakoi

At Merakoi we see patients as co-creators, not numbers. Our mini-community model embeds diverse patient experts alongside life-science teams to shape trials, content and digital therapeutics from concept to launch. Ready to swap one-dimensional journey maps for stories that move hearts and markets? Let's chat!

In this episode

You meet Dawn Morgan: MS advocate of 25 years, educator turned researcher, and co-lead of a groundbreaking, patient-led study on the intersection of multiple sclerosis and women’s hormonal health. A personal ER scare, hysterectomy, and years of misattributed symptoms pushed Dawn to ask what the literature didn’t: How do perimenopause, menopause, and surgeries like hysterectomy interact with MS symptoms, progression, and quality of life?

Dawn walks you through the Women’s Health Project—from first interviews with dozens of women to a 7,000-article scoping review and partnerships moving toward IRB-approved research. You’ll hear what gets missed in routine MS care (UTIs, fibroids, heat intolerance vs. hot flashes, anxiety, cog-fog, depression) and a clear call for pharma and MS orgs to partner with patient experts.

Guest Bio

Dawn Morgan — Veteran MS advocate (diagnosed in 2000), community leader, and co-lead of a patient-initiated research program on MS and women’s health. Her team received the Nightingale Award for patient-led innovation and collaborates with nonprofit and academic partners to formalize an IRB-ready qualitative study on MS and menopause.

Key Topics

• Why women’s hormonal health is underrepresented in MS research
• Perimenopause/menopause symptoms vs. MS symptoms: where confusion starts
• UTIs, fibroids, and the missing MS–GYN handoff
• From interviews to literature: what 7,000+ papers still don’t answer
• Building an IRB path with nonprofit + academic partners
• What pharma and MS organizations can do next (fund, co-design, publish)
• What you need to know

What you need to know

If you work in neurology, women’s health, clinical ops, or patient engagement, this episode offers a practical blueprint for partnering with patient experts to ask better questions and build studies that improve daily life, not just endpoints.

Press / Partner Inquiries

Interested in supporting the MS × Women’s Health project (funding, research collaboration, or publication partners)? Reach out and we’ll connect you with Dawn’s team

About Merakoi

At Merakoi we see patients as co-creators, not numbers. Our mini-community model embeds diverse patient experts alongside life-science teams to shape trials, content and digital therapeutics from concept to launch. Ready to swap one-dimensional journey maps for stories that move hearts and markets? Let's chat!

In this episode

Stage-four prostate-cancer survivor Alfred Samuels joins Kevin from Merakoi Voices to explore what happens when raw patient storytelling collides with hard clinical data. Alfred takes us from the night morphine couldn’t touch his pain, through a miracle PSA drop on the STAMPEDE trial, to becoming an award-winning filmmaker and author who now educates clinicians and inspires men worldwide. Together they unpack why “509 → 0.1” only matters when listeners feel the human stakes behind those numbers—offering a playbook for anyone creating content, trials or therapeutics with patients, not just about them.

Guest Bio

Alfred Samuels – UK security-consultant-turned patient advocate, author of Invincibility in the Face of Prostate Cancer, director of the two-part documentary A Survivor Amongst Survivors (47 festival awards) and Cancer Research UK Ambassador of the Year. Diagnosed with metastatic prostate cancer in 2012, Alfred became a “super-responder” whose lived experience now powers global awareness, diversity outreach and patient-led research design.

Key Topics

• From PSA 509 to < 0.1: translating stats into patient experiences
• Turning diaries into books, and books into an award-winning documentary
• Pushing back on “TV-worthy” edits: keeping the human face of cancer
• Co-creating content with caregivers: Grace’s role as first-line editor
• Reaching Black men and other under-represented groups through authentic narrative

What you need to know

About Merakoi

At Merakoi we see patients as co-creators, not numbers. Our mini-community model embeds diverse patient experts alongside life-science teams to shape trials, content and digital therapeutics from concept to launch. Ready to swap one-dimensional journey maps for stories that move hearts and markets? Let's chat!

In this episode

Join us for a deeply revealing conversation with Elizabeth, a distinguished judge turned determined patient advocate. From enduring a misdiagnosed aneurysm that led to a near-fatal brain hemorrhage, to navigating a series of medical oversights, Elizabeth’s story lays bare the emotional complexity behind patient care. Hosted by Debbie from Merakoi, this dialogue unpacks how personal resilience, persistent questioning, and self-advocacy can transform a passive patient experience into a pursuit of healthcare accountability—ultimately unveiling what truly lies beneath those simplified patient journey maps.

Guest Bio

Elizabeth – Former judge, stroke survivor, and unyielding voice for patient empowerment. Having faced medical negligence firsthand, she now channels her intellect and resolve into championing improved dialogue, accountability, and holistic support for patients whose warnings too often go unheard.

Key Topics

• Overlooked Symptoms & Their Near-Fatal Consequences
• Reclaiming Agency in an Intimidating Healthcare System
• The Emotional Whirlwind Beyond Standard “Touchpoints”
• The Power of Asking Questions and Challenging Diagnoses
• From Silence to Strength: Transforming a Patient Journey into Advocac

What you need to know

1. “Trusting your gut can be lifesaving.” If something feels wrong, keep asking questions until you get answers that make sense. Dismissing patient intuition risks missing critical diagnoses.
2. “Medical negligence nearly killed me, but I fought for the care I deserved.” Knowing when and how to push back is essential. Patients don’t have to accept a superficial ‘all clear’ when persistent symptoms say otherwise.
3. “Empowered patients shape better healthcare.” Seeking a second opinion, demanding clarity, and sharing your experiences fuels a healthcare system that values real-world patient insights over reductive data points.

About Merakoi

At Merakoi, we believe patients aren’t just data points—they’re co-creators of better healthcare. By partnering with patient experts and life sciences teams, we go beyond superficial journey maps and dig into the deeper, real-life experiences shaping care. Our aim? To create empathic, impactful solutions that truly honor the stories behind every touchpoint. If you’re ready to move beyond checklists and embrace patient-led innovation, Let's chat!

In this episode

Join us for an insightful conversation with Gary Ho, founder of the Gout Support Group of America and a leading advocate in patient-led research. Gary shares his journey from being medically dismissed to pioneering a movement that has significantly reshaped patient engagement. Together with Sandra Gier, Insights Lead at Merakoi, the discussion uncovers how true patient collaboration can transform healthcare research, reveal critical blind spots, and lead to meaningful, actionable outcomes.

Guest Bio

Gary Ho - Patient expert, founder of the Gout Support Group of America, and passionate advocate for patient-centric healthcare. Living with gout for over 30 years, Gary has successfully bridged the gap between patient communities and healthcare industries, turning lived experiences into impactful research and advocacy efforts.

Key Topics

• Moving from tokenism to true patient partnership
• Identifying blind spots through patient insights
• Innovative approaches beyond traditional market research
• Enhancing clinical trials through patient collaboration
• The power of community-driven healthcare solutions
• "True patient centricity isn’t about checking a box; it’s about embedding the patient voice into every stage of healthcare development."

What you need to know

1. "Patients are your co-experts, not just participants. Engage them early and continuously in your research and product development process. By truly partnering with patients, you'll gain insights that surveys and traditional market research methods simply can't provide."
2. "Real patient engagement requires proactive collaboration. Waiting until problems arise or decisions have already been made isn't enough. Be intentional about involving patient communities from the very start, ensuring their authentic experiences shape your strategic choices."
3. "Patient-led initiatives aren’t just beneficial—they’re transformative. Leveraging patient expertise doesn't only enhance research outcomes; it builds lasting trust and ensures solutions resonate deeply, ultimately improving patient outcomes and advancing healthcare innovation."

About Merakoi
At Merakoi, we believe AI should empower patients, not replace human connection in healthcare. We partner with life sciences companies, patient experts, and innovators to design more ethical, patient-driven solutions.

AI can crunch data, but it can’t replace lived experience. Need insights that actually matter? Let's chat!

Episode Overview

In this episode of Merakoi Voices, we explore the evolving role of AI in healthcare, patient advocacy, and business with Jeff TenBroeck—a patient expert in atopic dermatitis and digital entrepreneur. Jeff shares how he leverages AI for personal health research, content creation, and workflow automation, while also highlighting the ethical dilemmas AI presents in healthcare decision-making.

From AI-powered medical insights to insurance denials driven by algorithms, we unpack the promises and pitfalls of AI in modern healthcare and discuss what patients, industry professionals, and innovators can do to keep humanity at the center of AI-driven healthcare.

Guest Bio

Jeff TenBroeck – Patient advocate, entrepreneur, and digital marketing strategist. Jeff has been using AI tools for years to streamline business operations and enhance patient education. As someone living with eczema, he shares firsthand experiences on how AI helps (and sometimes hinders) healthcare accessibility and decision-making.

Key Topics

🔹 AI as a Patient’s Research Assistant – How Jeff uses ChatGPT and Google Gemini to understand his condition, prepare for doctor visits, and translate complex medical papers into plain language.
🔹 The Dark Side of AI in Healthcare – The growing role of AI in insurance claims processing and why Jeff was denied access to life-changing biologic treatments despite meeting all the clinical criteria.
🔹 AI in Business & Content Creation – How AI tools help Jeff automate marketing tasks, script social media content, and improve productivity—while also eliminating traditional job roles.
🔹 The Future of AI & Ethics in Healthcare – How AI can be both empowering and dangerous, and why patient voices must be included in AI development to ensure ethical and patient-centered innovation.
🔹 The Role of Patients in AI Co-Design – Why patient involvement in AI development is critical for creating ethical, effective, and human-first healthcare solutions.

"AI is a tool—not a replacement for human expertise. Patients need to stay informed, question AI-generated decisions, and ensure that technology serves people, not just profits." – Jeff TenBroeck

Main Takeaways for Life Science Professionals

1. AI Is Already Reshaping Patient Behavior
   Patients are actively using AI tools to research symptoms, interpret lab results, and prepare for medical visits. Pharma and healthcare companies must recognize this shift and find ways to support AI-driven patient education with credible, trustworthy resources.
2. Algorithmic Bias & Ethical AI Must Be Addressed
   AI is increasingly making life-changing healthcare decisions, from insurance claim approvals to clinical trial eligibility. But when AI prioritizes cost savings over patient well-being, who is held accountable? Ethical AI governance and patient advocacy are more important than ever.
3. AI in Healthcare Needs More Patient Involvement
   Healthcare AI isn’t just about efficiency—it’s about people. Engaging patient experts in AI co-design can ensure more equitable, transparent, and human-centered healthcare solutions.
4. AI as a Business & Healthcare Tool
   AI isn't replacing doctors or patients, but it is changing how people access and engage with healthcare. Industry leaders must embrace AI responsibly—leveraging its strengths while ensuring human oversight remains in decision-making.

About Merakoi
At Merakoi, we believe AI should empower patients, not replace human connection in healthcare. We partner with life sciences companies, patient experts, and innovators to design more ethical, patient-driven solutions.

AI can crunch data, but it can’t replace lived experience. Need insights that actually matter? Let's chat!

Episode Overview

Join us for an insightful conversation with Tina Aswani, a renowned patient advocate and founder of the South Asian IBD Alliance. Tina shares her powerful journey with inflammatory bowel disease (IBD) and her extensive experience in clinical trial advocacy. This episode explores the misconceptions surrounding clinical trials, the barriers faced by diverse communities, and the untapped opportunities for pharma to engage patients more effectively. Tina’s firsthand experiences and advocacy work provide valuable insights into reshaping the narrative around clinical trials and patient empowerment.

Guest Bio

Tina Aswani - Patient advocate, founder of the South Asian IBD Alliance, and leading voice in clinical trial education and diversity advocacy. With nearly a decade of experience as a patient leader, Tina has collaborated with pharmaceutical companies, nonprofits, and grassroots organizations to improve access to care, reduce stigma, and elevate the patient voice in healthcare decision-making.

Key Topics

• Misconceptions about clinical trials and their impact on patient participation
• The importance of early clinical trial education for mild-to-moderate disease patients
• Addressing cultural and systemic barriers to trial participation in diverse communities
• The role of patient advocates in designing patient-friendly trials
• Opportunities to expand decentralized and virtual trial models globally
• Bridging the gap between pharma, physicians, and patients through improved communication

"Patients need to know that clinical trials are not just an option of last resort—they’re an opportunity for early intervention, better care, and a voice in advancing medicine."

Main Takeaways for Life Science Professionals

1. Patients Need Early Education About Clinical Trials
   Many patients perceive clinical trials as a last resort, but early participation can provide significant benefits, such as access to advanced care and treatment options. As life science professionals, you have the opportunity to work on educating both patients and physicians about the value of trials for mild-to-moderate conditions, helping to dispel myths and build trust.
2. Diversity and Inclusion Must Be Prioritized in Clinical Trials
   Underrepresentation of diverse populations in clinical trials limits the understanding of how treatments work across different ethnic and cultural groups. Addressing this gap by engaging grassroots organizations, patient advocates, and communities of color can create trials that are both more inclusive and impactful, leading to better outcomes for all patients.
3. Patient-Centric Trial Design Is the Future
   Involving informed patient advocates in the design of clinical trials can lead to more patient-friendly protocols, improved recruitment, and better retention. From adjusting endpoints to shortening washout periods, life science professionals can collaborate with patients to create trials that meet real-world needs, bridging the gap between science and lived experience.

About Merakoi
At Merakoi, we're passionate about harnessing the power of mini-communities to bridge the information gap and empower patients to take control of their health journeys. By fostering ongoing collaboration between patients, healthcare providers, and pharma companies, we're creating a future where every patient has access to the knowledge and support they need to thrive.

Together, we can build a world where no patient is left in the dark, searching for answers. If this sounds like the kind of healthcare innovation you want to participate in, let's chat!

Episode Overview

Join us for an enlightening discussion with Patrick James Lynch, a filmmaker and advocate in the hemophilia community. Patrick shares his unique perspective on how social media and peer-to-peer learning shape the way patients discover new treatments. Building on his extensive experience in patient advocacy, the conversation delves into the gaps in patient education and the untapped potential of medical science liaisons (MSLs) in empowering patients.

Guest Bio

Patrick James Lynch - Advocate, award-winning filmmaker, and co-founder of BloodStream Media, a platform dedicated to storytelling and education for bleeding disorders. Patrick has spent years advocating for better education and engagement within the hemophilia community, blending lived experience with a deep understanding of patient challenges.

Key Topics

• How social media shapes patient learning journeys
• Peer-to-peer learning: Strengths and limitations
• Expanding the role of MSLs to include patients
• Addressing the complexity of shared decision-making
• Strategies for bridging the gap between science and lived experience

"Patients aren’t just looking for information; they’re looking for trust, for tools that help them feel empowered and informed."

Main Takeaways

1. Peer-to-peer learning is powerful but requires expert support to avoid misinformation.
2. Expanding MSL roles to patients can transform how medical science is communicated.
3. A strategic, multi-touch approach to patient education is critical for meaningful engagement.

About Merakoi
At Merakoi, we're passionate about harnessing the power of mini-communities to bridge the information gap and empower patients to take control of their health journeys. By fostering ongoing collaboration between patients, healthcare providers, and pharma companies, we're creating a future where every patient has access to the knowledge and support they need to thrive.

Together, we can build a world where no patient is left in the dark, searching for answers. If this sounds like the kind of healthcare innovation you want to participate in, let's chat!

Episode Overview

Join us for an insightful conversation with Ella Balasa, a patient expert and advocate with extensive experience in clinical trial co-design. This episode explores how early patient involvement can transform clinical research and development, building on Merakoi's commitment to patient-centered healthcare innovation.

Guest Bio

Ella Balasa - Patient expert and advocate specializing in clinical trial co-design, with a unique background combining microbiology lab experience and personal patient journey with cystic fibrosis.

Key Topics

• The evolution from patient advocate to healthcare consultant
• Building trust in underrepresented communities
• The importance of grassroots engagement in clinical trials
• Transforming the patient role from subject to partner
• Strategies for early patient involvement in trial design

 "It's not that patients are just in the center... we are sitting around the table with everybody else. We're a piece of this ecosystem."

Main Takeaways

1. The critical importance of human-to-human relationships in building trust
2. Why early patient engagement matters in trial design
3. How empathy drives better healthcare solutions

Related Resources

"From Patient to Partner: Transforming Clinical Trial Experiences Through Co-Design"

"The Patient Left in the Dark: My Story of Unanswered Questions" 

About Merakoi
At Merakoi, we're passionate about harnessing the power of mini-communities to bridge the information gap and empower patients to take control of their health journeys. By fostering ongoing collaboration between patients, healthcare providers, and pharma companies, we're creating a future where every patient has access to the knowledge and support they need to thrive.

Together, we can build a world where no patient is left in the dark, searching for answers. If this sounds like the kind of healthcare innovation you want to participate in, let's chat!