It set off a chain reaction. The point was not really shift work. It was that a trial can run over many months, and a person's availability changes across that time for all sorts of reasons, not just their working pattern. The scheduling and testing system needed flexibility built into it. Due to the nature of the blood tests the trial required, the client took that insight on board and it became a clear take-home point for the client team.

Nobody in that session asked whether one voice was enough. The other patients were nodding. The client highlighted it immediately as a good insight. It carried weight because a real person said it out loud, in a room, and everyone watched it land with others, instigating conversation about flexibility and why it is important.

Now picture the same sentence arriving inside a summary of forum posts. Would it have carried the same weight? And if someone had wanted to push on it, to ask what flexible actually means to you, or what would have worked instead, who were they going to ask?

The Power of Iterative Re-Probing

The fundamental limitation of AI synthesis isn't just accuracy; it's reachability. When a real patient's insight is ambiguous, turns out to be wrong, half right, or something we misheard, there is always a route to understanding. We can go back to that person and ask what they meant. We can re-probe to understand the insight better and fix it.

If the insight came out of an AI synthesis and it is wrong, what do you do? Who sorts it out? How do you fix a problem like an AI persona that hasn't actually lived the experience? You can run the prompt again from a different angle, or on different source data, and hope. There is no why to ask, because the data behind the insight, never experienced anything.

What a client is actually buying when working with real patients who have lived experience

Feature: respondents are attributable, named, and can be recontacted.

Advantage: you can carry on probing from where you left off, instead of re-recruiting, re-educating, briefing and bringing new respondents up to speed.

Benefit: deeper insights and possible solutions are found quicker, with less duplication of effort or repeating the whole project with a new group of people.

Some of what we do lets a client stay subscribed to a real patient expert across the life of a project. That means you are not continually scraping the surface with the same primary questions. You get into the nitty-gritty.

What happens when it goes wrong?

There is a second version of this, and it is about defensibility rather than depth.

Feature: a named, declared source.

Advantage: when something is challenged or goes wrong, the team has a map. It provides a pathway to go back, to get clarification and to put a wrong right.

Benefit: the person who signed it off is able to deal with it.

That matters more than it sounds. Somebody's name is on the recommendation that went upstream. If it turns out wrong six months later and their own leadership asks how they knew, "the model said so" is not an answer. Being able to go back to a patient to fully gauge an inconsistency is transparency at its best, and it's human. A synthesis does not offer you that. It offers you a re-run.

The question underneath all of it

Why spend our energy refining prompts to simulate human insight when the authentic version is right in front of us? AI is an exceptional tool for organizing existing data, and we use it where it excels. But as human health and real-world challenges evolve, static data falls short. AI cannot sign its name, take accountability for a recommendation, or answer a second question. When depth and defensibility matter, true insight requires lived experience.

Unpack the detail in our complete white paper:

The white paper

Lived Experience Can’t Be Prompted

The full paper: the patient accounts in a patient expert's own words, the automate-or-never table, the references and the method.

Get the paper

Finding patients was not the problem. Japanese blogs and forums were full of people talking openly about living with type 2 diabetes. What stood out was how carefully they had anonymised themselves while doing it.

We reached out over several weeks. Nothing came back. We assumed the problem was us, a European team cold-contacting Japanese patients, so we brought in native, well-connected market researchers in Japan. We asked patient experts to approach their own peers. Still nothing.

So we went to Japan and sat with patient groups in person. They were not unhelpful, quite the opposite. They searched their own membership for someone from that community and came up empty. Their explanation was the useful part. People did not want this known. Not out of some abstract shame about being ill, but because they feared the social consequences, and they feared their employer finding out. Social media was the outlet precisely because it could be anonymous.

We dropped Japan from the project. That perspective is not in the work.

Turkey, and a room full of doctors talking to nobody

A rare skin disease, some years earlier. The clinical literature put prevalence relatively high. The social platforms showed no patient conversation at all. The people posting about the disease were specialists, clinicians who had gone onto social media to reach their own patients. We read the comments under those posts. Nobody was answering them. The reason we were given there was blunter than in Japan: you do not discuss a condition like this openly, not with friends, not with family.

Silence on every side, including toward their own doctors.

Then there is the other kind of absence

It has nothing to do with shame.

In COPD, and in advanced cardiovascular disease, we work with an older demographic. Most of them have internet access and a smartphone. Almost none of them post. Reddit is one of the richest sources of raw patient experience anywhere, and a significant part of what models learn from. These patients are barely in it.

They are not absent from patient life, though. They run it locally. A patient representative for the Málaga region. A chapter lead for COPD patients in Florida. Every single patient we spoke to had built an emergency kit for a flare-up, along with their own set of ways to lower the risk of one, down to checking local air quality before deciding whether to go outside that day. None of it was written down anywhere. It moves by word of mouth, one patient at a time.

Ask a model what COPD patients struggle with and you will get breathlessness, fatigue, adherence. All true, all in the record. What you will not get is that the real answer is unevenly distributed. What a patient actually knows depends on their zip code, their healthcare system, and who happens to be running their local chapter. Those chapter leads were among the best informed patients we met, and they were teaching the newly diagnosed. Communities without one are fragmented, and they get none of it.

There is no such thing as the perfectly informed, perfectly managed patient.

The honest part

A patient panel is not a neutral instrument either. It is a sample too, drawn from the people with the time to sit for ninety minutes and the willingness to be recorded, and anyone who has run qualitative research knows that room is not the general population.

The two are filtered differently, and that is the argument for running them together rather than choosing between them. It is also the real advantage, which is not representativeness. It is that a person can be asked a second question, and can tell you the first one was wrong. A dataset cannot do either.

The skew in the written record is measurable, incidentally. Across the 341 trials behind FDA approvals between 2017 and 2023, only 6 percent enrolled all four of the largest US racial and ethnic groups in line with the census.

The question worth asking

Life sciences increasingly design diagnostics, drugs and studies for very specific populations. So before you skip patient engagement this quarter, the question is narrow: does the model represent the population this programme is actually for?

A confident AI answer sounds like coverage, but if the population your drug or trial is designed for is exactly the population AI never read about, the overconfidence is the risk, not the reassurance.

The white paper

Lived Experience Can’t Be Prompted

The full paper: the patient accounts in a patient expert's own words, the automate-or-never table, the references and the method.

Get the paper

I've been working with Merakoi now since early 2021, and I've worn quite a few hats in that time. Right now, I consider my core roles to be Engagement Manager and Moderator of patient sessions across different projects.

To me, wearing both these hats means I get to see a project from every angle. As an Engagement Manager, I’m the one holding the line between what the client needs and what our internal team can deliver - I'm basically translating a big strategy into a practical session plan. Then, when I step into the Moderator role, I’m the one in the room setting the tone. I decide which thread to follow when a conversation opens, because I know that the quality of what our experts share really depends on the quality of the questions I ask. Since I usually hold both roles, I can make sure the project stays connected to that real patient experience from the very first call to the final readout.

In simple terms, I help connect the dots between patients, clients, and internal teams.

I feel I have the most impact in the space I create for patients when they’re sharing their lived experience, which can be deeply personal. It is incredibly important to me that they feel respected and safe, so I work to create that psychological safety by asking the right follow-ups and balancing empathy with clarity. But creating that safe space is only the beginning; the real magic happens when that safety allows for a level of honesty that transforms the work itself.

From "Technically Correct" to "Actually Meaningful"

Patient experts make a project dramatically better, just by being there. They bring lived experiences which translate theory into reality; talking to them makes it really clear what truly matters when someone is navigating a chronic illness. It brings an "emotional truth" which often reveals what data alone cannot. In short, patient experts help move a project from being technically correct to being actually meaningful.

Editors note: On "emotional truth". The most accessible anchor for this kind of language is Brené Brown, a research professor at the University of Houston whose work on vulnerability has reshaped how leaders and clinicians think about authenticity. Her line "stories are data with a soul" describes exactly what Rebekka is reaching for: the lived, felt dimension of experience that quantitative data alone can't reach.

▶ Watch: Brené Brown, The Power of Vulnerability (TED, 2010). Editor's note: On the science of "strategic fuel". Rebekka's chocolate habit is actually backed by more than just a sweet tooth; research suggests that cocoa flavanols can enhance cerebral blood flow and sharpen cognitive performance during high-intensity mental work. When navigating a full day of deep, emotional patient sessions, that small boost becomes a vital tool for staying present and focused.

When we treat patients’ expertise as strategic expertise, not symbolic inclusion, projects become grounded, relevant, and far more likely to succeed in the real world. I believe patient experts are often misunderstood when they are seen merely as adding perspective; they are actually adding foresight. Patient expertise is most powerful when used "upstream," when direction is still flexible, and assumptions can be challenged. When they are brought in too late, they are asked to validate something that is already 90% there, and their role becomes reactive rather than creative. This shift from reactive validation to proactive foresight isn't just a theory; I’ve seen it completely save a project from missing its mark.

Recalibrating the Compass

I remember one project where we were refining patient communication materials for a healthcare initiative. The messaging was clinically accurate, the design was nice, and it all looked strong on paper. But during a session, one of the patient experts said something very simple:

"It just doesn't feel like it's written for us, the younger generation."

They didn't identify with the language or the images, which were all of aging, fragile people.

Up until that moment, the focus had been on clarity and completeness, but the person receiving the information hadn’t been truly centered. That one insight shifted the entire direction of the work. Moments like that reinforce why patient expertise is not decorative - it literally recalibrates the compass. Of course, finding those moments of clarity requires staying incredibly focused during a session and knowing when to steer the conversation back to what matters.

The "Gentle Reset Button"

When I’m in a session and notice we are drifting into "tactical weeds" or forgetting why we are here, I use my "gentle reset button" phrase: "Let’s zoom out for a second." I use it to help us reconnect to the purpose and focus on the questions we actually need answers to. I learned a lot of this by observing my colleagues, Debbie and Sandra, when I first joined as a patient coordinator. Watching how they didn't let momentum or stress get to them shaped me a lot.

Finally, if you want to know how I stay sharp during a long day of sessions, a double espresso is non-negotiable. I also always have dark chocolate on hand, because I'm a total chocoholic. I've decided that chocolate is strategic fuel, not an indulgence!

Editor's note: Rebekka isn't wrong about chocolate as "strategic fuel". There's real, if modest, evidence that the flavanols in cocoa support cerebral blood flow and short-term cognitive performance during demanding mental tasks. Over a long day of patient sessions, that's not nothing.

Nope.

You just ask a better question:
“What would you click on?”

This is exactly how MrBeast reverse-engineers virality. By tapping the brains of a small circle of expert content consumers. People who live and breathe the platform. They're not guessing. They know what works—because they've been burned by what doesn’t.

Now think about healthcare.

We’re still starting from zero.
Still commissioning expensive market research.
Still asking general populations about complex diseases they’ve never lived with.

Why?

Ask Someone With Scars

If you're developing a product or running a clinical trial in, for example, multiple sclerosis or IBD, you don’t need a blank slate. You need someone who has lived with the condition. Someone who has:

• Tried five medications that failed
• Learned how to self-manage during flare-ups
• Navigated hospital systems as a local

In short, you need a consultant. Not a professional one in a suit—but a lived-experience consultant. A disease expert who didn’t read a textbook or study medicine, but instead wrote their own survival guide.

At Merakoi, I have the privilege of working with exactly these people. We call them patient experts. They're not advocates looking to post another awareness ribbon. They're strategic, thoughtful, and often have professional experience in marketing, education, digital health, or community building. Some even have built communities of their own​. Many of these individuals exhibit grassroots patient leadership on a daily basis.

Patient experts are ready to help companies avoid rookie mistakes and design better solutions from the start.

Stop Getting Stuck in Advocacy Mode

The problem? Many healthcare companies are still trapped in the advocacy mindset:

• Invite a patient to a roundtable
• Ask them for a quote for your internal slide deck
• Maybe even feature their story in a video

And then… move on.

Even when companies do seek patient input, the default move is often to reach out to whoever has the loudest voice online i.e. a patient influencer with a large following. But a big audience doesn’t automatically equal deep insight. It doesn't tell you whether that person has actually worked with their community, or has the experience to translate their lived reality into meaningful guidance for product design, trial protocol feedback, or communications strategy.

But what if you flipped the script?

What if you treated patients not as one-off storytellers, but rather as ongoing consultants?

• Bring them into sprint planning
• Let them review your onboarding flows
• Ask them what’s confusing, condescending, or just plain wrong

The truth is, these folks want to help. But you need to meet them at the level of a partnership, not just as a "patient"​ or "advocate".

For Those Already Doing This Internally… and Those Who Aren’t

Some organizations already have internal teams working directly with patients. If that’s you...amazing, you're already on ahead of the competition. You’re doing the work, building trust, and learning from real-world feedback in real time. You know how rewarding it can be and how resource-intensive.

But if you're stretched thin or not yet set up for this kind of engagement, here’s the good news: you don’t have to do it all yourself to do it well.

Outsourcing patient engagement doesn’t mean giving up control or compromising on authenticity. Done right, it means plugging into systems that are already running—with people who’ve spent years building these relationships, refining the methods, and learning the hard lessons. You still stay close to the insight, but without the full-time operational lift.

It’s not about handing it off. It’s about accelerating your learning curve with partners who live and breathe this work. People who know how to find the right voices, how to keep engagement respectful and productive, and how to turn lived experience into design-ready insight.

You don’t lose anything.
You gain time, perspective, and a deeper bench of expertise.

Mini-Communities. Max Value.

We’ve seen it time and again: when companies stop treating patients as “extras” and instead make them central to research, clinical trial design, and communication strategies, everything improves:

• Recruitment speeds up
• Drop-off rates drop
• Messaging resonates
• Solutions actually work in the real world​

And because mini-communities can be segmented (by disease severity, life stage, or even digital savviness) you get precision feedback, not generic patient voice.

The Future is Patient-Consulted

So here’s the takeaway:

If MrBeast wouldn’t launch a video without consulting his inner circle of content experts…
…why would you launch a health solution without consulting people who know what it’s like to live with the condition, every day?

Stop paying to start from zero.
Start learning from people with scars.
And treat your next focus group like the expert team it actually is.

Ready to meet your next patient consultant? Let’s talk.

Best,
Kevin

Bonus:
MrBeast’s leaked playbook caused a stir when it surfaced, just like its creator.
Love him or not, it’s packed with insights on building things people actually want. And while it was written for content creators, the thinking applies to anyone designing an experience for humans.

👉 Here’s the link (hosted on our own Drive)

Use it. Adapt it. Just don’t ignore the core principle:
Ask the people you’re building for.

About Merakoi

At Merakoi, we believe the best healthcare solutions come from those who live with the conditions every day—patients. We connect life sciences companies with patient experts to co-design better treatments, trials, and healthcare innovations. Need insights that actually matter? Let's chat!

Her emotional arc—fear, anger, and then resolve—never appears on conventional patient journey maps, but it dictated every outcome that followed. How do we account for patient emotions when designing health solutions?

Emotions: The Missing Data Problem

Most teams source patient journeys from health record data or interviews with clinicians. These sources are valuable, but they leave big gaps. Electronic health records hold detailed codes for scans, drugs, and lab values, yet few systems capture social or emotional context. Important drivers and blockers, such as fear of a procedure, worry about job loss, or family stress, are absent. What they do record, endlessly, is medication orders. Unsurprisingly, teams optimise for what they can see, not what patients feel. 

Even when data sources accommodate patient emotions, it’s still a challenge to collect sensitive information in situ. By their very nature, emotions are hard to express in the moment. When worry or confusion keeps a patient from sharing a key detail, even the best AI tool will still produce the wrong answer.

Most patient journey slide decks indicate emotions with a single sad‑face where “patient feels concern.” That icon implies a discrete moment; emotions are rarely so simple. Fear peaks when the letter with scan results never arrives, not on the actual “diagnosis day.” Shame surfaces when side‑effects keep the patient away from their daily jobs and careers, not during the clinic consultation. By simplifying real-life emotional impact to emojis and dots on journey map, we end up designing patient brochures, clinical trials and treatment support programs for a world that doesn’t exist.

Elizabeth’s story teaches us two things. First, deep emotions come only from the patient’s own words, often in retrospect and from patients who have gone through the experience; no code or chart field will reveal them. Second, those emotions can change life‑and‑death decisions. If her initial fear had turned into a question instead of silence, the aneurysm might have been clipped years earlier. For a company designing a diagnostic, a therapy, or a support service, missing that moment can mean missed enrolment, late detection, or a failed launch.

“Punch Biopsy”: One Phrase, Big Pause

When I wanted to illustrate this point in another therapy area, a colleague mentioned an example with patients who have atopic dermatitis. She told me how potential trial volunteers would pause when they heard the words “punch biopsy.” They imagined all sorts of things: an extremely painful experience, a hole in the skin that never heals, and above all lack of understanding of why this would be necessary. The issue was not the procedure itself; it was the frightening picture in the patient’s mind. Until that picture is addressed and discussed, recruitment can stall. This anxiety would never appear in an EHR and might not surface in a doctor‑focused journey map, yet it can make patients reconsider taking part in the study or dropping off when learning about the protocol.

Volunteers imagine a hole that never heals; afterwards they see a brief pinch that could unlock life-changing data.

Charting Emotions on the Patient Journey

True emotional data start with listening sessions, diaries, or moderated online groups with patients that bring real-life, lived experiences. Ideally, you ask patients who have direct experiences with the treatments or diagnostics you are investigating. 

I like to plot patient emotions as a layer in the patient journey, aligned to the clinical or treatment journey. You can plot the patient quotes on a simple curve: –5 means panic, +5 means confidence. You soon see deep valleys—waiting for scan results, imagining a biopsy, fearing a job review when eczema flares. Those valleys mark where we must act.

A rich patient journey will be full of relevant stories, sourced directly from patients themselves. Emotions, as we all know, are complicated and will vary between individuals, but with enough voices, clear patterns and commonalities start to emerge.  I leave it up to you to determine how far you want to go with emotional mapping, but with just a handful of experienced patients, especially those who have gone through the journey themselves and can walk in the shoes of other patients, you will already start to see the tapestry of patient emotions and the relevance as driver or barrier for your therapy, study, or diagnostic.

Applying Emotional Insights to Your Next Milestone

• For clinical teams: recruit a small patient panel early, before protocol lock.
  
• For medical affairs teams: A treatment can be clinically brilliant yet fail when anxiety blocks first dose. As stewards of real‑world evidence and patient safety, you  are uniquely placed to translate emotional barriers into actionable risk‑mitigation plans.
  
• For commercial teams: test brand messages against the emotional curve, not just message recall.
  
• For market‑access teams: capture how fear or confusion drives non‑adherence; payers listen when you link empathy to real‑world persistence.
  

Elizabeth’s story shows us the price of a flat patient journey map; layer in patient feelings and you start to position your innovation for real human-centered health care.

Podcast link

Listen to Elizabeth’s full story on the Merakoi Voices podcast: How a Missed Aneurysm Changed My Fight

About Merakoi

At Merakoi, we believe the best healthcare solutions come from those who live with the conditions every day—patients. We connect life sciences companies with patient experts to co-design better treatments, trials, and innovative approaches. Want insights that genuinely matter? Let's chat!

When Patients Become More Than Participants

I recently worked with Gary Ho, founder of the Gout Support Group of America. His community has over 16,000 members—a sign that many people want guidance from someone who truly understands their disease. Gary joined us as an active partner in the market research study, not just another interviewee or respondent.

“We are not just input providers. We are experts in our condition.”

- Gary Ho, Merakoi Patient Expert in Gout

Because Gary was involved from the beginning, we gained a richer understanding of everyday issues that might otherwise remain hidden. His input helped translate findings into practical solutions…ones that actually hold up in the day-to-day decisions patients face.

And Gary isn’t alone in taking on this kind of role. In other fields, patient communities have taken the lead as co-researchers e.g. designing studies, shaping protocols, even analyzing data. The Patient-Led Research Collaborative produced one of the first comprehensive studies on Long COVID, fully authored and driven by patients themselves. Their findings have since been cited in both clinical guidance and national policy debates.

Lived Disease Researchers Create Better Insights

Even the best-designed surveys and discussion guides can leave gaps. This is where patient experts help. They bring real-life knowledge about hurdles people face, such as feelings about new treatments, hidden costs of care, and daily challenges. 

“The patient community can help industry find barriers and needs that often go unnoticed.”

- Gary Ho

In one project, our client said the patient-driven insights were “more concrete and more aligned with actual patient needs,” which helped them make decisions they felt confident about. Instead of sorting through information that felt disconnected from daily life, they had a roadmap tied to real patient stories.

Similar results have been reported by others. The PREFER project, co-led by patient organizations and academic partners in Europe, showed how co-designing preference studies with patients improved both regulatory relevance and sponsor clarity. Likewise, CreakyJoints' ArthritisPower registry allows patients to set the agenda for what gets measured—leading to more timely insights on everything from medication side effects to vaccine hesitancy.

Co-Creating Research Plans

You do not need to stop using surveys or focus groups. Instead, try inviting patient experts to help plan each step. Ask them to review your research plan or co-create discussion guides with you. If you only include them when the questions are already written, you might miss the deeper issues that patients actually worry about. In my projects, the biggest breakthroughs often happen when patients are part of the planning stage, not just involved at the end. 

 In a study about gout, we initially focused on lifestyle concerns and medication problems. Gary highlighted specific challenges that did not appear in our original list of interview questions. By adding these points, we uncovered emotional and social aspects of gout we had not fully considered. Afterward, the client told us the final insights were more concrete and useful than they had expected. We did not abandon standard methods; we simply gave them more depth by bringing Gary into our project team.

Why This Matters to You

If you’re someone who needs to understand how patients think, act, and feel—whether you’re designing a clinical trial, developing a new product, or deciding on a therapy approach—you can gain unique advantages by involving patient experts. Working with them helps you see beyond the basics of “what” patients do, to discover “why” they do it. This can point you to clearer, more informed choices for your business or project.

My own experiences have shown me how powerful it is when decision-makers invite patients to share the stage. They hear direct accounts of what daily life is really like and can pivot strategies based on credible, authentic input. Traditional research alone often struggles to capture these subtle but crucial details.

Sandra

p.s.

If you’re curious about the deeper layers of patient collaboration touched on in this article, check out Gary Ho’s Interview on the Merakoi Voices Podcast.

About Merakoi

At Merakoi, we believe the best healthcare solutions come from those who live with the conditions every day—patients. We connect life sciences companies with patient experts to co-design better treatments, trials, and healthcare innovations. Need insights that actually matter? Let's chat!—and remember: your questionnaire can’t raise its hand when you miss a question.

It started with my accountant, who—like clockwork—sent me a long list of missing receipts needed to close the books. If you've ever run a startup or small business, you know this ritual well. You scramble to gather invoices, rename them into something comprehensible, and send them back for processing. It's a mess of filenames with no context.

I wanted a smarter way to rename each receipt with the vendor name, date, and amount. So, I ventured into the world of AI-assisted "no-code" development.

On the recommendation of an investor, I tried Lovable, a tool he’s been using to automate back-office processes at his investment fund. Unlike many no-code platforms, Lovable generates visible code, allowing those who can read and tweak code to fine-tune results.

Four hours and $20 later, I had my app. It ingests PDF receipts and renames them in a structured way that my accountant now loves. In hindsight, I probably could have renamed each file manually in less than four hours—but now I have a tool that will save time in the long run.

AI Is Changing How We Work—And How We Heal

This small experience reinforced something important: AI removes barriers. No more excuses like "I don’t have time to learn programming." The same applies to learning human languages. Over the weekend, I spoke with someone working in drug delivery quality control (because in Switzerland, half the people you meet work in pharma, and the other half work in banking). He told me that instead of spending hours translating and reviewing technical documents, he now runs them through DeepL—getting a near-instant, high-quality translation. What used to require fluency and significant time now takes minutes.

So, it should be no surprise that patients are also using AI for managing their health. Some are even pushing the frontiers of AI-driven healthcare.

Take this example from a caregiver dad using ChatGPT Pro for deep medical research on behalf of his child:
🔗 Read the thread here.

Later in the thread, OpenAI’s Chief Product Officer joins the discussion—highlighting how even the people building AI tools recognize their transformative potential in healthcare.

If, like me, you learn best by hearing what others have tried, I highly recommend listening to my recent podcast conversation with Jeff TenBroeck, one of our patient experts in atopic dermatitis. Jeff has used AI for years—both as a patient and as a business owner. When he was first diagnosed, he, like many others, turned to Google to understand his condition. But instead of just reading articles, he started having direct conversations with AI.

"Instead of Googling my questions, I’d ask ChatGPT and have a back-and-forth conversation, refining my queries until I got the information I needed," Jeff explained in our latest podcast.

AI as a Healthcare Companion

AI isn’t just a search engine replacement—it’s a companion for patients. Instead of passively reading medical information, Jeff uses AI to structure his research:

Preparing for doctor visits – He structures questions to ask his doctor, making the most out of limited appointment times.

Understanding his condition – He asks ChatGPT to break down medical papers into plain language.

Verifying information – He cross-checks AI-generated answers against trusted sources like the National Eczema Association before making any healthcare decisions.

But AI’s power comes with risks. As Jeff warns, AI sounds authoritative—even when it’s wrong. That’s why fact-checking AI responses is essential.

The Ethics of AI in Healthcare

Of course, AI in healthcare isn’t just about convenience—it’s also about responsibility. Ethics in our industry has traditionally been handled by Standard Operating Procedures (SOPs) and codes of conduct. Follow them, use your best judgment, and you generally stay on the right side of ethics.

But AI breaks this ethical comfort zone.

We’re now dealing with semi-autonomous agents, and soon, perhaps fully autonomous ones, influencing clinical studies, drug development, regulatory filings, marketing, and patient interactions. The ethical questions shift from "Did we follow the SOP?" to "Did an AI-driven decision result in harm?"

That’s a topic for a future post.

For now, I’ll leave you with this: AI is already making an impact. The question is, how will you use it?

Resources & Further Reading

If you're curious about the AI tools and discussions mentioned in this article, check out the following:

• Jeff TenBroeck’s Podcast on AI & Healthcare (Merakoi YouTube)
• Lovable (No-Code AI Development Platform)
• ChatGPT Pro (an eye popping $200/month for enterprise features)
• The Twitter Thread on AI in Healthcare
• DeepL (High-Quality AI Translation Tool)

About Jeff TenBroeck

Jeff TenBroeck is a patient expert in atopic dermatitis, entrepreneur, and tech enthusiast. Always on the lookout for smarter ways to manage his condition and business, he experiments with AI-driven solutions to streamline workflows and improve daily life.

About Merakoi

At Merakoi, we believe the best healthcare solutions come from those who live with the conditions every day—patients. We connect life sciences companies with patient experts to co-design better treatments, trials, and healthcare innovations.

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

Myth #1: “I’ll Just Get a Placebo”

One of the biggest misconceptions patients have is the fear of getting a placebo, which many equate to receiving “no treatment at all.” Tina shared that the fear of placebo is a huge barrier for patients considering trials.

“Patients think it’s potluck: Do I get the treatment, or do I get a placebo? They don’t realize it’s not just about one or the other. Trials are usually structured to ensure they’re still getting the standard of care if they’re not receiving the investigational treatment.”

In reality, most trials are designed to include either the experimental treatment or the best available standard of care—rarely just a sugar pill. Patients aren’t left without options, and this misunderstanding often keeps them from accessing the potential benefits of cutting-edge care.

Myth #2: Randomization Is Unfair

For patients, the word “randomization” can feel unsettling. It’s easy to see why: it implies a lack of control in an already vulnerable situation. Tina’s response to this was direct and insightful:

“Patients don’t always understand the randomization process. Some even think their worsening symptoms are tied to whether they got the placebo or not. But in reality, many trials are designed to allow patients access to the investigational treatment if it’s effective, even after the placebo phase.”

As professionals, we must clarify that randomization is a scientific tool designed to eliminate bias, not an arbitrary gamble. It ensures the reliability of trial results, which in turn benefits patients long-term.

Myth #3: Trials Offer Little Care

A common misconception is that clinical trials prioritize data collection over patient care. However, the opposite is often true. Tina shared her experience of receiving exceptional care during her trial participation:

“I was being seen weekly. Granted, it was a lot on me to have my mother drive me two hours each way into New York City, but there was solace in the fact that I had such robust care,” she explained.

For patients with limited access to healthcare or specialists in their disease, the care provided during a clinical trial can be a welcome and much-needed resource. Trials often offer access to tests, monitoring, and resources that help patients better manage their disease. This level of proactive monitoring goes far beyond what most patients receive in routine care. Clinical trials are meticulously designed to safeguard participants’ health, ensuring frequent check-ins and faster response times. This robust care model is a strong counterpoint to fears that trials are impersonal or risky.

Myth #4: Trials Are Only for Severe Cases

Many patients believe that clinical trials are exclusively for those with advanced or severe disease, reinforcing the misconception that trials are a 'last resort.' However, trials often include participants with mild-to-moderate conditions to evaluate early intervention strategies. Tina highlighted the importance of engaging these patients earlier:

"No provider ever told me early on that considering a clinical trial could make a huge difference before my disease became more complex. We need to educate patients about these options much earlier in their journey."

This 'last resort' mindset keeps patients from exploring options that could prevent their disease from progressing to more severe stages. By informing patients and healthcare providers that trials aren’t just for the most critical cases, we can expand access to innovative treatments and improve outcomes.

Myth #5: Clinical Trials Are Inaccessible

Another common misconception is that clinical trials are geographically or financially out of reach. However, decentralization and virtual models are changing the game. Tina shared her perspective:

"Decentralized trials gained traction during the pandemic, and they’re a game changer. If I could have done telehealth visits or had a nurse deliver the medication to my home, it would have been a completely different experience."

Decentralized trials and virtual options reduce logistical barriers, but access gaps still remain. Local trial sites and community-based recruitment can further ensure trials are within reach for diverse populations.

Education Is the Missing Piece

The real issue isn’t the placebo or randomization itself—it’s the lack of education about how these elements work. These myths often have roots in cultural narratives, media portrayals, and historical missteps by researchers and pharmaceutical companies. Distrust stemming from unethical studies in the past, sensationalized media stories, and a lack of transparency in trial processes has compounded the fear and misunderstanding patients feel today. Tina emphasized the importance of involving clinical research coordinators and patient advocates to rebuild trust and break things down for patients:

“Patients need to understand how the trial works, what their rights are, and what guarantees they have. Without that, fear and mistrust will continue to hold them back.”

We can’t assume patients will just get it. Clear communication and resources co-created with patient advocates can make a world of difference in how trials are perceived.

Take Action: Patient-Centric Communication

If there’s one thing I’ve learned from Tina’s advocacy, it’s this: clinical trials must be about more than just advancing science. They must advance trust. For those of us in the pharmaceutical and life sciences fields, this means creating trial designs and communication strategies that prioritize patient understanding and empowerment.

When we demystify the process—placebos, randomization, and all—we unlock the potential to truly partner with patients in advancing medicine. And isn’t that why we’re here in the first place?

If you found this discussion insightful, don’t miss my full conversation with Tina on the Merakoi Voices podcast. It’s packed with even more powerful stories and actionable ideas to transform how we approach clinical trials.

About Tina Aswani Omprakash

Tina Aswani is a passionate patient advocate, founder of the South Asian IBD Alliance, and a globally recognized voice in the IBD community. With years of experience navigating chronic illness, she works tirelessly to bridge the gap between patients and clinical research, advocating for diversity, equity, and patient-centered care in trials.

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 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!

For many patients, discovering information about new treatments starts in the same place where they find recipes or reconnect with old friends: social media. As I reflect on discussions with hemophilia patients and Patrick James Lynch, an advocate and thought leader in the hemophilia community, it’s clear that platforms like Facebook groups and online forums are critical hubs of information exchange. Patients turn to these spaces not because they distrust their healthcare providers, but because they want real, lived experiences.

Patrick’s insights are invaluable because he’s not only a patient but also someone who has spent years advocating for better education and engagement within the hemophilia community. His perspective, shared during our recent conversation, sheds light on how patients navigate this complex landscape.

"For those who are active online, who are active in the closed Facebook groups, that's where a lot of it takes place."

These groups serve as informal classrooms where patients teach and learn from each other, sharing updates from clinical trials, personal experiences, and even secondhand insights from healthcare professionals.

Yet, this peer-to-peer learning, while powerful, is far from perfect.

Peer-to-Peer Learning: A Double-Edged Sword

There’s no doubt that the patient voice is uniquely valuable. In these online spaces, patients and caregivers offer a kind of support that healthcare professionals and pharmaceutical companies often cannot replicate. They speak from experience, in plain language, and with genuine empathy.

But as Patrick rightly pointed out during our conversation, this can also lead to problems.

"People may be lived experience experts, but I'm not a scientific or medical expert. So if I start chiming in with, 'Well, the reason this is this based on my lived experience,' now we're starting to venture into problematic territory."

The exchange of information is only as good as the source, and without scientific validation, misunderstandings can take root.

This is where professionals—medical science liaisons (MSLs), healthcare providers, and advocacy groups—need to step in. But often, their role in these communities is limited or underutilized.

The Gaps in Patient Education

Patrick and I discussed the critical need for patients to understand their treatment options, particularly as medical advancements bring more complexity. For example, in hemophilia, the treatment landscape has shifted dramatically from a single gold-standard therapy to a range of options, including gene therapies and non-factor treatments.

Patients can’t meaningfully participate in shared decision-making if they don’t understand the basics.

Yet, much of the education provided today is still aimed at doctors, not patients.

When patients aren’t equipped with accurate, digestible information, they’re left to rely on social media or community events where peer-to-peer learning dominates. These venues are essential but incomplete. They can spark curiosity but rarely offer the structured, evidence-based education patients need.

What’s Missing: Strategic, Multi-Touch Campaigns

The reality is, learning about a new treatment is not a one-and-done process. Patients need multiple opportunities to absorb information, process it, and ask questions. This requires a strategy that integrates different formats and touchpoints—short videos, infographics, webinars, and in-person events.

One-off webinars or explainer videos are a start, but they’re just that: a start. What happens after the video ends? Where does the patient go for follow-up questions or deeper understanding?

"People need numerous touch points to go from, 'I don't know anything about this' to 'I know enough about this to go talk to my doctor.'"

Wraparound campaigns deliver information over time, progressively informing patients and filling information gaps. Imagine a series of short, engaging videos that explain the basics of a treatment, followed by an interactive webinar with an expert, and capped off with a live Q&A session. The goal is to meet patients where they are, both emotionally and logistically, while giving them the tools to take the next step.

Let’s Engage, Educate, Empower

We are in a unique position to fill these gaps. Patients aren’t just looking for information; they’re looking for trust. And trust isn’t built by simply publishing data; it’s built by listening, engaging, and responding.

One way forward is to better connect the activities of MSLs and community relations managers. MSLs, who traditionally work with healthcare professionals (HCPs) and key opinion leaders (KOLs) to provide scientific context and insights, have a wealth of knowledge that could be extended to patients and patient opinion leaders (POLs). First introduced in 1967 by Upjohn Pharmaceuticals, MSLs were created to foster more meaningful, science-based interactions with HCPs compared to traditional sales representatives. This innovation transformed the relationship between the pharmaceutical industry and medical professionals. Now, it is time to consider another pivotal shift—extending these partnerships and their scientific expertise to include patients and POLs. Such an approach can bridge the gap between complex medical science and the real-world needs of patient communities, ensuring that education is both accurate and accessible. By broadening their partnerships, MSLs can help bridge the gap between complex medical science and the real-world needs of patient communities, ensuring that education is both accurate and accessible. Community relations managers often engage directly with patients, providing insights into their concerns and preferences, while MSLs possess the scientific expertise needed to contextualize new treatments. By collaborating closely, these groups can identify the most critical topics, such as treatment mechanisms, side effects, or access pathways, and ensure patients receive well-rounded, comprehensible guidance that empowers them to make informed decisions. Aligning their efforts and creating clear feedback loops can transform how patients access and process information.

There’s also a role for patient advocacy organizations to step up. While they may struggle with competing priorities, they’re uniquely trusted by patients. By partnering with all of us working in health, they can elevate the quality and reach of patient education.

It’s Time to Think Bigger

When I reflect on what’s needed, it’s clear that this is not just about better videos or more webinars. It’s about creating an ecosystem where patients feel supported, informed, and empowered to make decisions about their health. It’s about acknowledging the value of peer-to-peer learning while addressing its limitations. And it’s about realizing that education isn’t just a nice-to-have; it’s a critical component of better health outcomes.

As someone deeply immersed in these conversations, I’m convinced that we can do better. If we’re ready to take action or just want to explore these ideas further, start by watching the full podcast with Patrick.

About Patrick James Lynch

Patrick James Lynch is a prominent advocate and leader in the hemophilia community. As someone living with hemophilia, Patrick has dedicated his career to improving education, awareness, and support for patients. He is an award-winning filmmaker, podcast host, and co-founder of BloodStream Media, a platform focused on storytelling and education for bleeding disorders. Through his work, Patrick combines lived experience with a deep understanding of the challenges faced by patient communities, making his insights particularly valuable in shaping better engagement strategies.

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!