Voices
Stories from people living with illness, and the teams who listen to them
Patient essays, podcast conversations and our own thinking on AI and patient insight. Pick something to read in five minutes or listen to on the way home.
Latest · Article · 4 min readWhat happens when the insight is wrong?
One patient out of eighteen asked how shift workers would book their trial appointments, and it changed the scheduling design. The part worth noticing is what you can do next when a real person said it. Gap 5 of five.Read the story →
Listen
All 17 episodes →The Merakoi Voices podcast
Patient experts talk about diagnosis, trials and being heard.
Podcast episode · DiabetesPatient Voices & Health Systems in India — A Conversation with Deepak Shukla
Podcast episode · GastrointestinalTrust, Plain Language & Patient Navigators — A Conversation with Stephanie A. Wynn
Podcast episode · Multiple SclerosisMS & Patient-Led Research — A Conversation with Dawn Morgan
Podcast episode · OncologyNumbers and Narratives – A Conversation with Alfred SamuelsRead
More stories and essays
Article · 5 min readInsider Spotlight: Why I’m Moving Patient Engagement "Upstream" to Find the Emotional Truth
Since I am more comfortable sharing my perspective through the written word than on camera, I wanted to take this opportunity to…
Article · 5 min readWhy Start from Zero? Just Ask the Patient Consultant
Why start from zero with market research when you can ask someone who’s lived the disease? Patient consultants offer strategic insights grounded…
Article · 5 min readFlat Journey Maps, Hidden Risks: Why Patient Feelings Must Shape Design
Elizabeth’s fear stayed off the chart, yet it turned a routine scan into paralysis — proof that emotions unseen in EHRs can…
Podcast episode · CardiovascularConfidence, Crisis, and Comeback – A Conversation with Elizabeth Manuel Bayleigh
Elizabeth, a high-powered judge turned vulnerable patient, reveals how she overcame devastating medical oversights. Explore her fight for transparency, self-advocacy, and the…
Article · 4 min readGoing Beyond the Questionnaire
Surveys used to be enough—until they weren’t. Beyond the questionnaire lies a depth of real-world patient expertise we can’t afford to ignore.…
Podcast episodeReshaping Healthcare with Lived Experiences – A Conversation with Gary Ho
Ever felt like your 'patient engagement' is more box-checking than groundbreaking? Meet Gary Ho—who went from 'dismissed patient' to 'healthcare revolutionary.' Tune…
Article · 4 min readAI, Healthcare, and the Everyday Revolution
AI is transforming how we work—and how we manage health. From automating tedious tasks to revolutionizing patient research, AI removes barriers. Patients…
Podcast episodeAI in Healthcare: Friend or Foe? – A Conversation with Jeff TenBroeck
In this episode, Jeff TenBroeck shares how AI is transforming patient research, business automation, and even insurance decisions. From ChatGPT-powered health insights…
Article · 6 min readPlacebos, Myths, and Real Care: Clinical Trials Uncovered
We dive into the biggest myths around clinical trials—from placebo fears to accessibility issues—and set the record straight. With insights from patient…
Podcast episode · HemophiliaBuilding Trust and Diversity in Clinical Trials: Tina Aswani Omprakash
Ever thought of clinical trials as a last resort? Think again. Tina Aswani flips that narrative in this episode, showing how trials…
Article · 6 min readFrom Social Media to Science: How Patients Really Learn About New Treatments
Social media has become a cornerstone for patient learning, but it lacks the depth of expert guidance, Extending the expertise of MSLs…
Podcast episode · HemophiliaBridging the Gap Between MSLs and Patient Advocacy: Patrick James Lynch
Join us for a sharp and engaging chat with Patrick James Lynch, a powerhouse advocate and storyteller in the hemophilia community. In…
Podcast episode · RespiratoryFrom Lab Coat to Study Participant to Trial co-Designer: Ella Balasa
Join us for an insightful conversation with Ella Balasa, a patient expert and advocate with extensive experience in clinical trial co-design. This…
Article · 7 min readWhy Patient-Driven Lay Summaries Matter in Healthcare
"Clinical trial information and medical research are often locked behind complex terminology," says Ashley Lora, patient expert living with atopic dermatitis for…
Article · 6 min readWhy Obesity Treatment Requires More Than Medication
Obesity treatment isn't just about medication or weight loss," says Melanie Bahlke, patient expert. "It's about changing your mind, not just your…
Article · 8 min readThe Patient Left in the Dark
I am the patient who has been left with many unanswered questions, the one who has had to do my own research…
Article · 7 min readFrom Patient to Partner: Transforming Clinical Trial Experiences Through Co-Design
To uncover rich patient insights, merakoi employed a unique methodology, empowering PwMS as research partners. By harnessing the power of patient-led research…
Article · 5 min readHow to Beat the Competition with Patient Outcomes
To uncover rich patient insights, merakoi employed a unique methodology, empowering PwMS as research partners. By harnessing the power of patient-led research…
Article · 7 min readDelivering Personalised Experiences in Co-Designed Interventions
By focusing on activation as a driver for the solutions we create, we can provide a personalised experience that empowers them to…
Article · 7 min readSuperhero Communities in Chronic Diseases
Seven years after being diagnosed with ulcerative colitis, a form of inflammatory bowel disease (IBD), I finally opened up about it online.…
Article · 7 min readUnleashing Patient Power: Co-Design for Better Trials
From Passive Participants to Active Co-Designers Imagine a world where clinical trials prioritize the needs of patients, not solely focus on testing…
Article · 6 min readDecoding the Human Element
How User Research Shapes Health Innovation Imagine you're a master chef. You've spent months crafting the perfect dish, a combination of exotic…
Podcast episode · OncologyPersonalised Medicine: NTRK, Genomic Testing & The Future of Cancer Treatment
Advances in biomarker discovery are helping scientists learn more about the drivers that cause many types of cancers to grow. Neurotrophic tyrosine…
Podcast episode · AutoimmuneInside Atopic Eczema: More Than 'Just A Skin Condition'
Atopic eczema is one of the most prevalent skin conditions globally, affecting over 230 million people worldwide. There is a tendency to…
Podcast episode · NeurologyIn Conversation with Dan and Jennifer Digmann: A Couple Takes On MS
On our most recent LinkedIn Live broadcast, we featured Jennifer and Dan Digmann, two of our patient experts in MS. Jennifer was…
Article · 13 min readHow to get the most out of your dermatology appointment
Atopic dermatitis (AD) is a complex medical condition, and no two eczema patients present with the same symptoms. Nor do they have…
Podcast episode · OncologyImmunotherapy Month: in conversation with Oriana Sousa
June is Immunotherapy Awareness Month, and we are so pleased to have the opportunity to sit down with merakoi patient expert, Oriana…
Article · 10 min readDriving patient value by minimizing patient burden
VALUEPatient = (HEALTH OUTCOMESPatient) / (BURDENPatient) In the first part of this article, the focus was on increasing patient value by…
Podcast episode · NeurologyMS Connections: In Conversation with Robert Joyce
In honor of World MS Day, we were delighted to host MS patient expert, Robert Joyce as our latest LinkedIn Live guest.…
Article · 6 min readUnderstanding patient knowledge and attitudes regarding early phase clinical trials
Findings from our survey Today, May 20th, we celebrate International Clinical Trials Day, a commemoration of the day that James Lind laid…
Article · 9 min readDriving patient value by improving health outcomes
It has often been said that “value is in the eyes of the beholder.” Michael Porter, professor at Harvard Business School, introduced…
Article · 8 min readAmplifying the Patient Voice: Define the scope of the Patient Council
There is value to incorporating the insight and experience of patient experts throughout the patient journey. In Part 1 of this article,…
Article · 9 min readAmplifying the Patient Voice: Establishing a Patient Council
“Voice of the Customer.” The customer has been a focus of business for over fifty years and a key component of Total…
Podcast episode · OncologyFuture Forward: How Technology Can Transform Cancer Care
In honor of Colorectal Cancer (CRC) Awareness Month, we were delighted to host Stage IV survivor and merakoi patient expert, Stacy Hurt,…
Article · 1 min readPatient Advocacy: Why Do Women Advocate More Than Men?
Why are women more likely than men to pursue patient advocacy roles? An interesting study conducted by the patient engagement consultancy, merakoi, looked…
Podcast episode · Oncology
