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!