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.

A large group seated in a session, every person turned toward the one participant who has raised a hand to speak.Latest · Article · 4 min read

What 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 →
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The Merakoi Voices podcast

Patient experts talk about diagnosis, trials and being heard.

All 17 episodes →
Rebekka Insider SpotlightArticle · 5 min read

Insider 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…
merakoi mrbeastArticle · 5 min read

Why 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…
depiction of balanced scales one side filled with legal symbols gavel law book the other with healthcare icons pill bottleArticle · 5 min read

Flat 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…
Elizabeth and Debbie YTPodcast episode · Cardiovascular

Confidence, 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…
patient questionnairesArticle · 4 min read

Going 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.…
Gary and Sandra YTPodcast episode

Reshaping 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…
a doctor and a patient having a conversation overlaid with digital lines of AI code and chatbot interfaces illustrating theArticle · 4 min read

AI, 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…
Jeff and Kevin YTPodcast episode

AI 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…
Image in the style of a Mythbusters episode A nervous female southeast asian holding a medicine pill in each handArticle · 6 min read

Placebos, 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…
Merakoi Voice YouTube PosterPodcast episode · Hemophilia

Building 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…
hemophilia patient at the center of a knowledge sphereArticle · 6 min read

From 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…
Debbie and Patrick YTPodcast episode · Hemophilia

Bridging 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…
Merakoi Voice YouTube Ella BalasaPodcast episode · Respiratory

From 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…
A serene visualization of a female patient at the center of a knowledge sphere where jumbled medical data represented byArticle · 7 min read

Why 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…
obesity treatments with melanieArticle · 6 min read

Why 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…
A female patient with long red hair sitting at a computer searching for information on ulcerative colitis with browser tabsArticle · 8 min read

The 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…
codesign clinical trials with patients as partnersArticle · 7 min read

From 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…
merakoi mini communitiesArticle · 5 min read

How 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…
segmentationArticle · 7 min read

Delivering 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…
IBD superheroes logoArticle · 7 min read

Superhero 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.…
a patient and a doctor playing jengaArticle · 7 min read

Unleashing 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…
user researchers trying to decode the end userArticle · 6 min read

Decoding 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…
Tumor testing NTRKPodcast episode · Oncology

Personalised 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…
Atopic dermatitis handsPodcast episode · Autoimmune

Inside 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…
MS blogPodcast episode · Neurology

In 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…
dermatologist appointmentArticle · 13 min read

How 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…
immunotherapyPodcast episode · Oncology

Immunotherapy 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…
merakoi driving patient value by minimizing patient burgenArticle · 10 min read

Driving 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…
MS connectionsPodcast episode · Neurology

MS 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.…
merakoi understanding patient knowledgeArticle · 6 min read

Understanding 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…

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