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

The moment it became a thing

My dad has suffered with high blood pressure for most of his life, for as long as I have known him. About ten years ago he asked me directly whether I had checked mine, and told me I should be aware of it. So I went home and did a cuff measurement. It came out a bit high. In fact pretty high. Later I found out I was not wearing the cuff properly, but it was still in a concerning range.

Since that moment I have been pretty conscious of blood pressure and the risks. I have swung around from normal range to slightly elevated, and never gone into the hypertension diagnosis range, fortunately. I think that is due to active measurement and control and lifestyle change.

Googling it

Part of the process was turning towards technology. At the time, that meant Google. I remember asking it what hypertension is, what normal ranges are, and how to measure it. That is where I learned how to wear a cuff properly, the different types of devices, and how to do self-measurements.

At the doctor's office I would constantly get much higher measurements than at home. I later learned this was a kind of white coat syndrome. For many people, getting a measurement at the doctor's office is a stressful experience, and it increases your blood pressure at exactly that moment.

The paper diary

One decision I did make was to go to my GP and ask for her advice. She listened intensely, and then gave me a paper diary to fill out, with instructions to take cuff readings several times and how to do it. I was supposed to bring it back and we would have a further discussion.

By the time I got back to her, I have to say the diary was not very consistent. I had taken sporadic readings and they were all over the place. She took a quick glance at it, looking for trends, and for what I now know is called time on target. That was probably very difficult to see in readings like mine. What she could see was that the numbers were not hypertensive, so she put me in the at-risk bucket. Let's monitor this closely. Right now there is no cause for concern. You might cut back on the salt, and yes, reduce the cheese. "I know that's really hard because we're in Switzerland, but you told me you like raclette. Maybe don't eat so much of that."

What that visit also did was place a lot of stress on me. Do I need to do something or not? Is this serious or not? Sometimes I would leave the question for months, and other times I would pick it up again.

The day the chatbot arrived

I can tell you about the day ChatGPT arrived. It was the first version I tried, and I was super excited about a chatbot that actually seemed intelligent and could hold a conversation. One of the first things I asked it about was hypertension and blood pressure management.

I got a pretty good response, but not a satisfying one. It did not explain much more than I already knew, and there were a lot of safety rails. The chatbot was hesitant to give any kind of medical advice, which is understandable. Of course there were ways around that. One of them was acting like a doctor. "I have a patient presenting with high blood pressure, these are the readings." ChatGPT would then give advice as if I were the doctor.

What came back was actually useful. It did not give many sources at the time, but it came off as very knowledgeable, and it was conversational, so I could ask about specific lifestyle changes and diets and what was relevant for me. The answers were on the level of a conversation with a GP. I remember asking my GP similar questions and getting very similar answers, which in one sense was very comforting.

From an episode to a conversation

Over time I got more comfortable sharing information about my health with it. That was a risky move, and I took a lot of time over the privacy settings before I felt comfortable sharing certain types of information. Then projects arrived, where you could store your documentation and health records and the chatbot could refer to them as part of its memory. I hooked up my Apple Watch data, heart rate, sleep patterns, exercise, and for the first time I could make really interesting correlations about what was driving my blood pressure changes. Sleep patterns and stress. Certain times of the day. That was enlightening, and it helped me actually make some changes to my lifestyle.

Managing blood pressure became more of a conversation than an episodic thing. Episodic meant I only did it every once in a while, when I remembered to do a cuff measurement, and even less often when I happened to have a doctor's appointment.

The stack of papers

Meanwhile, on the clinician side, it turns out this is not so easy. In the course of "let's monitor", my GP gave up her practice and retired. I recall going to the office and asking for all my health records. She gave me a stack of papers. I remember going through them, trying to digitise them, and somewhere in the stack was my old diary of blood pressure readings. I picked it up and looked at it and thought, well, that was at least a couple of years ago. Maybe I should start again. But who to turn to? I had to find a new GP. So again I left the question unanswered.

Two speeds

Technology and the healthcare system moved at two different speeds over those ten years. On one side, Google, and then the chatbots when they arrived, and you could do more and more with them and get more and more insight. But one thing they could not do for you is make decisions. That rested with me, and to some extent with my clinician.

And more importantly, the chatbot had no idea what was happening with my GP and her retirement. The friction points in the healthcare system, the difficulty of getting a true view of my health, the limited time to actually speak to somebody about a decision, or co-decision as they call it. None of this is documented or understood by the chatbot. In that sense it is living in a parallel world, while human interactions, human decision making, and the healthcare system as a whole drive what really shapes your patient journey.

Somewhere there is a chatbot that thinks my GP is still in practice. The white paper is about everything else it does not know.

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.

As someone who has lived with atopic dermatitis (AD), also commonly known as eczema, for over 30 years, I’ve navigated a wide range of treatments and therapies, both as a patient and as a professional consultant in healthcare. For the past seven years, I’ve worked with pharmaceutical companies, healthcare organizations, and patient advocacy groups to ensure that patient perspectives are front and center in medical research and communication. From this dual vantage point, I’ve seen firsthand the disconnect between complex scientific studies and the patients those studies aim to help. This is why I am a passionate advocate for lay summaries and, more importantly, for including patients in the creation, review, and dissemination of those summaries.

Breaking Down Medical Barriers

Medical research is evolving faster than ever before and cutting-edge treatments and diagnostics are emerging. For patients, understanding the research behind potential treatments can provide hope, reassurance, and empowerment. However, this understanding is often blocked by a wall of jargon-filled research papers, clinical trial reports, and medical terminology that is inaccessible to most patients.

That’s where lay summaries come in. A well-written lay summary translates dense, technical research into clear, concise, and accessible language that patients can understand. But it’s not just about simplifying; it’s about making the information meaningful to patients. Lay summaries can help patients make informed decisions about their care, track the progress of treatments, and advocate for themselves in conversations with healthcare providers.

As a patient advocate and content creator, lay summaries also enable me to share accurate, research-based information with my online community. In the era of rampant misinformation, this accessibility is more essential than ever. When research is accessible and written in terms I can grasp, I can then translate that information in a way that resonates with my community, offering them clarity and helping counter the flood of false information that circulates online. Without access to accurate, understandable summaries, I—and other advocates—are left unable to relay critical findings back to the communities we serve.

In my own journey with AD, I’ve experienced how empowering it is to understand the science behind my condition. When I can grasp how a treatment works or why a particular therapy was developed, it changes the way I approach my health. I’m not just a passive recipient of care; I’m an active participant. That’s the power of patient-friendly information, and it’s why lay summaries are critical.

Patient Voice in Research

While lay summaries are essential, they are only truly effective when patients are involved in their creation. Too often, these summaries are written by researchers, doctors, or—more recently—AI tools, with little input from the very people they are meant to serve. As a result, even "simplified" versions of studies can still miss the mark, failing to address the specific concerns or priorities of patients.

As someone with deep experience both as a patient and a consultant in the healthcare space, I know that patients bring a unique and invaluable perspective. We understand our conditions in ways that healthcare providers or researchers may not. We know what questions we need answered, what concerns keep us up at night, and how we interpret information. For example, when I consult with pharmaceutical companies on eczema-related projects, I often highlight issues that might seem minor from a medical perspective but are significant for patients—like the day-to-day burden of managing a chronic, visible skin condition or the anxiety that comes with flare-ups. These insights should inform not just the treatments themselves but also how those treatments are communicated to the patient community and the impact it has on a patient’s day-to-day activities.

Involving patients in the creation of lay summaries ensures that the language is not only clear but also resonates with our lived experience. It allows for a more compassionate and empathetic approach to medical communication. And when patients are involved in reviewing and disseminating these summaries, it builds trust between the research community and the patients they aim to serve.

Transforming Healthcare Communication

For pharmaceutical companies, this shift toward patient involvement in lay summaries is not just a "nice to have"—it’s a necessary evolution. As healthcare becomes more patient-centered, there is a growing expectation from both patients and regulators that medical information be accessible and transparent.

Pharma teams that prioritize patient input in the development of lay summaries are not only meeting this expectation but also gaining a competitive advantage. By involving patients, pharma can create materials that speak directly to the concerns of their target audience, improving patient engagement and adherence. It’s a win-win situation: patients feel more informed and empowered, and pharma companies can build stronger relationships with their patient communities, leading to better outcomes in clinical trials and product adoption.

Additionally, as AI becomes more integrated into medical communication, there is a temptation to rely on automated tools to generate lay summaries. While AI can be a useful tool, it cannot replace the nuanced insights and empathy that come from real patient experiences. Lay summaries generated solely by AI risk missing critical emotional and practical aspects of patient care. Pharma must recognize the irreplaceable value of involving patients directly.

Building Better Patient Resources

In my work as a patient consultant, I’ve had the privilege of seeing the impact of patient involvement firsthand. Whether it’s advising on the language used in educational materials or sharing my lived experience in roundtable discussions with healthcare leaders, I’ve seen how much value patients can bring to the table. Recently, I participated in a project with Merakoi focused on ocular surface diseases, and once again, the importance of patient insights was clear. My background in eczema and AD gave me a unique perspective on chronic, inflammatory conditions, which is something that resonates with many OSD patients as well.

When I share my story with pharma teams, I often highlight how being able to fully understand my treatment options transformed my care. Lay summaries were a key part of that transformation, but only because they were crafted with the patient in mind. That’s why I continue to advocate for not just better communication, but for patient-driven communication.

Shaping the Future of Patient Communication

If pharma teams are serious about improving patient outcomes, they must commit to creating lay summaries that are accessible, meaningful, and patient-centered. But more than that, they need to involve patients in the process—from creation to review to dissemination. As someone who has lived the reality of a chronic condition and worked professionally in patient advocacy, I can attest to the transformative power of patient involvement. Let’s build a future where medical research doesn’t just talk about patients but talks with us.

Merakoi commentary

What else you need to know

« The UK's Health Research Authority (HRA) has taken a groundbreaking step by implementing new Participant Information Quality Standards and Design Review Principles, effective December 1, 2023. This mandate requires all patient-facing documents, including Informed Consent Forms, to undergo patient review to ensure content relevance and comprehensibility. This progressive approach aligns perfectly with what patient experts like Ashley have been advocating for – making clinical trial information more accessible and meaningful for participants.

This UK requirement serves as a model for the future of lay summaries globally. By mandating patient involvement in document review, it acknowledges that effective healthcare communication isn't just about simplifying complex information – it's about creating materials that truly resonate with patients' needs and experiences. The requirement for British English usage, clear explanation of acronyms, and structured study summaries demonstrates a practical commitment to patient-centered communication that other regions would do well to emulate. »

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!

In the battle against obesity, new medications have emerged as powerful allies, offering hope to millions struggling with weight loss. However, as patient expert Melanie Bahlke reveals, these medications are just one piece of a much larger puzzle. Melanie, who leads the obesity surgery self-care association in Germany, paints a picture of obesity treatment that goes far beyond simply prescribing medication.

Melanie Bahlke is the Chairperson of Adipositaschirurgie Selbsthilfeverein Deutschland, focusing on obesity prevention and patient engagement, particularly for children and adolescents facing obesity challenges.

Promising Yet Limited

"For everyone (including physicians), this is a huge step," Melanie says, referring to the new obesity medications. "And for the patient, that's a new way to handle obesity." There's no doubt that these treatments have generated excitement and hope among patients, many of whom have struggled with weight loss for years.

However, Melanie is quick to point out a crucial limitation: "When you receive the medication, that's brilliant. But you have only changed your body and not your mind." In other words - while medications can be effective tools for weight loss, they don't address the psychological and lifestyle factors that contribute to obesity.

Holistic Approaches

Both Melanie and Merakoi strategist Debbie Denison emphasize that medication alone is not enough to tackle obesity effectively. As Debbie notes, even the websites for these medications recommend combining treatment with diet and lifestyle changes. But Melanie goes further, advocating for a much more comprehensive program:

"The medication then can work better when patients have a good psychologist and nutritionist and somebody who will teach you to go out and have fun and make friendships."

Mental health support, nutrition guidance, and finding joy in activity - all these are the essential components for sustainable weight management.

Rethinking Exercise

Interestingly, Melanie challenges the use of the word "sport" (also meaning exercise), which can be intimidating for many living with obesity. Instead, she suggests focusing on "mobility":

"Mobility! I think there should be more mobility for your bones and for your muscles. The thing is we do not have a good build and core strength. I only have the muscles in the legs that can hold my weight."

This shift in perspective from "athletics" to "mobility" could be key in making physical activity more approachable and less daunting for those beginning their weight loss journey. It's a reminder that effective obesity treatment must be tailored to the specific needs and capabilities of each individual.

Psychological Impact

A recurring theme in Melanie's insights is the critical role of mindset and mental health in obesity treatment. She emphasizes that obesity often affects a person's entire outlook:

"So many people that are so affected from obesity that their whole mindset is confused. They have no structure and they need help."

This underscores the need for comprehensive support that goes beyond just physical interventions. Mental health resources, community support, and strategies for developing healthy habits are all crucial elements of a successful obesity treatment plan. Building supportive communities can play a vital role in managing chronic conditions like obesity.

Numbers Don't Tell the Whole Story

Melanie challenges the traditional focus on weight as the primary measure of success in obesity treatment. She points out a crucial flaw in this approach:

"Instead of speaking about losing weight, we should speak about becoming healthy. When you are concentrated on your kilos, the circle starts again and again, and you lose motivation."

Obsessing over kilos lost can be counterproductive, potentially leading to cycles of frustration and demotivation. Instead, Melanie advocates for celebrating other indicators of progress, such as increased mobility, improved mental health, or enhanced quality of life. This views aligns with modern understanding of health, where factors beyond weight - such as metabolic health, cardiovascular fitness, and emotional well-being - define overall wellness.

Digital Integration

Digital health apps like Zoe and Noom have revolutionized weight management by focusing on behavioral psychology and lifestyle modifications. These apps use evidence-based techniques to help users reframe their relationship with food, develop healthier habits, and make sustainable changes.

While these digital solutions have proven effective for many users, they have yet to be fully integrated with breakthrough pharmacological treatments for obesity. The opportunity lies in connecting these two powerful interventions to create a seamless user experience.

Melanie highlighted the potential of this integration: "You can have digital apps in your pocket, in your hand, and that is something that is not visible. And you can have it all the time." For people with mobility limitations, traveling to frequent in-person appointments or classes can be difficult, uncomfortable, or even impossible. Yet, apps are just an arms length away.

By combining the behavioral support of digital apps with the physiological effects of medication, patients could benefit from a more comprehensive and personalized approach to weight management. This integration could help address the limitations of medication-only treatments by providing ongoing support, education, and motivation.

The challenge now is for pharmaceutical companies and digital health providers to collaborate and create solutions that seamlessly blend medication management with proven behavior change techniques.

Comprehensive Care

Melanie proposes an intriguing model for initiating obesity treatment - a dedicated clinic or program where patients can start their journey:

"My wish is for a program, maybe two weeks, where you go to a clinic. They teach you, they give you the medication, and they provide knowledge about nutrition, mental health care, and all the other important aspects. It's not just about the medication - it's about learning how to manage your health."

This concept of a "kickstart" program that combines medication initiation with education and comprehensive support could be a game-changer in helping patients set themselves up for long-term success. It embodies the holistic approach that Melanie advocates for throughout her discussion.

Debbie's Takeaway

Tipping the Scales ...of Innovation

Melanie’s message is straightforward: while new obesity medications offer valuable tools in weight management, they are not a silver bullet. To truly address this complex condition, we need a collaborative and innovative approach that brings together pharmaceutical innovations, digital health solutions, mental health support, and lifestyle interventions.

What stands out to me is the opportunity for cross-industry collaboration. Pharma, digital health, mental health, and even the fitness industry could create groundbreaking solutions by working together. Imagine a care platform that integrates medication management, psychological support, tailored mobility programs, and community engagement. This interview with Melanie has reinforced my belief that the next big breakthrough in obesity treatment won't come from a single sector, but from innovative partnerships that address the a spectrum of patient needs.

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!

If you watched the recent conversation between our digital strategist, Debbie, and eczema patient advocate, Ashley Lora, you’ll know many important and interesting topics were brought to light. One key topic was the lack of information and knowledge sharing, which is something patient communities are really crying out for. It’s something I’m personally really passionate about, so I wanted to expand on the problems and some potential solutions a little further.

I am that patient. I am the patient who has been left with many unanswered questions. I am the patient who’s had to do lots of my own research - allowing me to try treatments for my ulcerative colitis that weren’t offered by my inflammatory bowel disease (IBD) team, and diagnosing my own skin condition. I am the patient who has been sent away with a printed sheet to learn about the new treatment I’m starting because the gastroenterologist (GI) didn’t have time to go through any of it with me. I am the patient who ultimately lost all faith in the healthcare system because of my repeated experiences of invalidation and a lack of a good standard of care.

Knowledge gaps filled by the World Wild Web

Many patients want to understand medication decisions and be able to be part of the decision-making process about what goes into their body. They want to understand why treatment X might work better for them than treatment Z. They want to understand what the latest research is saying and how that could impact future treatment options. They want to know if there’s a clinical trial they can get involved in. But all too often, no one is telling them these things.

In an ideal world, patients would know exactly where they can look at their treatment options more closely. They would be able to look at the research and outcomes in layman's terms and understand which treatment might work best for them and why, as well as preferences such as route of administration (rectal, oral, subcutaneous, or intravenous). With this knowledge, patients could view their options and make an informed choice depending on what best suits their lifestyle.

Newly diagnosed patients or those with lower health literacy skills often only know what the doctor tells them. They trust that the healthcare professional looking after them knows best. But, when one, two, or three, of the treatment options haven’t helped or have stopped helping, or tests haven’t highlighted a cause for symptoms, those patients begin asking questions, often outside of their healthcare team. They start asking Dr Google and other patients on social media and in groups. This is concerning because, without good health literacy skills, the World Wide Web is a confusing, and often scary, place. There’s conflicting information, misinformation, and people and companies looking to pray on the vulnerable and sick.

Filling gaps as an advocate and what the life science industry has to offer

I’m an IBD advocate, and I’m lucky enough to be able to read and join in with, a very active online community of GIs. Each week, on X, MondayNightIBD engages GIs around the world in conversations that are useful for patients like me to read. It helps me understand how the people sitting on the other side of the table think and prioritise. It also helps me understand what their pain points are!

I utilise lists to keep an eye on what’s going on in GI and I follow GI event coverage on social media to learn about breakthroughs in science and technology. During COVID, I was regularly scrolling through a list I’d created of UK gastroenterologists, colorectal surgeons, and IBD specialist researchers, to stay up to date on what the recommendations were so I could feed it back to my community.

I have access to this information, and for that I am grateful, but most people living with IBD or raising awareness of IBD don’t go to the nerdy lengths I go to. They won’t read journal papers because they do not understand them, so they have no idea what treatments, therapies, apps etc. are being developed until someone like me or a charitable organisation picks it up and starts to talk about it. And I don’t have all the time in the world to keep myself up to date and the community apprised. In fact, I often feel like I have no time to invest in that side of things; it’s dependent on how much support has been necessary elsewhere in the community each week, as there’s only so much of my time I am able to give freely.

I understand the issues around pharma directly engaging with patients and sharing their research. However, patients should, at the very least, be able to access this information or know it exists.

Reimagining the doctor-patient relationship

The doctor-patient relationship has the potential to be a wonderful source of knowledge, inspiration, and hope, but as it stands, it regularly falls far short of that. The time I get with my GI is mainly taken up by her running through standard questions about the frequency, urgency, and consistency of my bowel movements and the medications I’m taking. Imagine if that time were instead used to talk about the results of my latest tests, what this might mean going forward, and what options I might have in the future based on the newest research. That is a conversation I’d like to be part of!

Why should health companies care about the patient information gap

At this point, you might be wondering why pharma, device, or diagnostic teams should even concern themselves with addressing the information gap faced by patients. After all, their primary focus is on developing and delivering innovative treatments and diagnostics. However, there's a compelling value proposition for health companies to invest in patient education and engagement.

When patients feel informed and engaged, they're more likely to get tested, adhere to treatment plans, participate in clinical trials, and become advocates for better care within their communities. This, in turn, can lead to improved patient outcomes, increased brand loyalty, and ultimately, better business results for pharma companies.

Moreover, by collaborating with patients to create accurate, understandable educational materials, health companies can demonstrate their commitment to patient well-being and build trust with the very people they aim to serve. This trust is essential in an era where patients are increasingly skeptical of the pharmaceutical industry and seeking greater transparency.

Investing in patient education and engagement is not just a nice-to-have – it's a strategic imperative for health companies looking to thrive in a patient-beneficial healthcare landscape.

Mini-communities are a great way to make change in healthcare

Small collaborative groups of healthcare stakeholders can create solutions. At Merakoi, we call these "mini-communities" and they offer a powerful way to address the current lack of information sharing between healthcare providers, pharma companies, and patients. By bringing together diverse groups of patients, physicians, specialists, and pharma or health tech innovators, mini-communities enable the co-creation and dissemination of accurate, understandable educational materials that meet the needs of all stakeholders.

So, how would this work in practice? Let's use IBD as an example. An IBD mini-community could be segmented based on factors like patient activation measurements (PAM), disease type, professional skills, clinical trial experience, and influence. Highly activated patients with content creation skills would be ideally suited for the co-creation phase, as they understand the language and informational needs of other patients. Physicians could provide medical expertise and ensure accuracy, while pharma companies could share their latest research and developments.

To ensure the co-created materials are truly accessible and understandable, additional mini-community cohorts could be involved in the review process. For example, patients with lower health literacy levels could provide feedback on the clarity and comprehensibility of the content. If the materials focus on clinical trial information, a cohort of patients with trial experience should be engaged to offer their unique insights.

Given the constantly evolving nature of medical research and treatment advancements, mini-community partnerships should be ongoing, allowing for the timely updating of educational materials. This continuous engagement not only ensures that patients have access to the most current information but also fosters a sense of trust and collaboration between all parties involved.

Co-created content can then be disseminated through various channels, including patient advocacy groups, influential patient leaders, healthcare providers, and specialists. By involving mini-communities of influential patients in the creation and sharing of these materials, we can amplify their reach and impact.

Ready to bridge knowledge gaps in your therapy area?

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!

About Merakoi
Merakoi partners with health and life sciences companies to build mini-communities that guide product development through continuous user insights. Our network of patients/advocates and proprietary community platform enable engaging, longitudinal co-creation between users and developers. The result is human-centered solutions that resonate powerfully in the real world.

The Complexity of Patient Journeys

As projects progress from insights to solution co-design, we look to collaboratively address unmet needs with continuous input from patients, physicians and industry stakeholders. One of the key challenges when designing solutions is tailoring the experience to each person’s needs. Building mini-communities of patients and other stakeholders with shared experiences around a specific condition can provide valuable support and understanding. 

Given the complexity of patient journeys, there is no one-size-fits-all approach that will work for everyone. Solution design often utilises a modular approach to deliver a personalised experience through self-segmentation. However, these modules need to incorporate behaviour change goals and the diverse needs of those adopting the solution. Failing to address this early on in the process leads to challenges in recruitment and retention, ultimately missing the opportunity to positively impact the lives of patients.

Segmentation: A Challenging Endeavor

Let’s look into an example from an ongoing project to illustrate the complexity around segmenting patients for solution co-design. For this project, we are developing a digital therapeutic for people at moderate to high risk of stroke. We mapped hypertension across various disease pathways - from essential hypertension to comorbid conditions where hypertension is present and diseases where acute hypertensive episodes are likely.

Collaborating with a diverse mini-community representing potential conditions associated with hypertension, we focused primarily on the clinical journey while also incorporating areas where patients seek support and information outside the clinical setting. Utilising a train map analogy, we identified areas of moderate and high stroke risk to understand the points in the journey where a solution could benefit patients and their care teams.

After mapping the patient journey, we moved to segmentation, to better understand those patients who were at the highest risk of stroke. We segmented by disease, number of comorbidities, access to specialist Centres of Excellence of Comprehensive Stroke Center, age, smoking status, treatment type and history of stroke. After aligning on the priority segments, we needed to understand their needs and concerns around disease management and uncontrolled hypertension.

Usage data or KPIs from existing digital solutions or patient support programmes would also need to be layered into the segmentation data. As you can see, this process can become quite overwhelming. Is there a simpler way to segment which could deliver equally effective results

PAM: A Simpler Segmentation Approach

It is widely accepted that people who have the knowledge, confidence and skills to manage their disease have better health outcomes than those who take a more passive approach. Highly activated patients living with long term conditions are more likely to engage in positive health behaviours and manage their disease, and their health, more effectively than those who have low levels of activation. 

The Patient Activation Measure (PAM) is a framework is one of the foundations of personalised care adopted by healthcare systems in Germany, Denmark, Japan, the UK, Canada and others.

Benefits of the PAM Framework

It’s easy to see how the PAM framework could be useful in moving patients from lower levels of activation to higher ones by empowering them with the knowledge and confidence they need to self-manage their disease. Roughly half of all people living with a disease could be in PAM levels 2 and 3, enabling you to address larger segments through your digital solution, PSP or digital therapeutic.

PAM in Practice: Solution co-design

In a recent oncology project, where detailed patient data was lacking, we swiftly adapted by employing the PAM framework to create personas based on actual cancer patients. Engaging in sessions with mini-communities of cancer patients enabled us to gain valuable insights into the unique needs and challenges of people in each activation level. Insights were utilised to drive content planning and improve experience design , and create additional modules that had not been previously considered by the client team.

Olivia (not her real name) was a PAM level 1 patient living with Non-Hodgkin’s lymphoma. Everyone in the mini-community could empathise with Olivia - she was overwhelmed, disconnected from her disease management, had low levels of knowledge and few coping skills. People who are diagnosed with cancer typically start here, and it is very difficult to recruit or retain them onto digital solutions, apps, or patient support programmes in this stage. 

During our sessions, we explored what Olivia would need in terms of resources, support / connection, appointment and side effect management. But we also looked at how that information could be presented in easy to digest formats that would help Olivia understand her disease at a time when she is ready to learn. We explored mental health concerns and how peers her own age who had been through a similar journey might be needed to help Olivia come to terms with her cancer and accept it.

We repeated the process for our other personas in levels 2 to 4, taking the mini-community through each and asking them to walk in the shoes of each person to identify gaps and opportunities for the client team to meet the needs of each patient segment.

Enhancing Insights with Additional Cohorts

In this example, the cross-indication mini-community was able to walk in the shoes of other patient segments, providing valuable insights into their needs and challenges. Many members of the mini-community had been in similar situations throughout their own patient journeys or knew and interacted with peers in their communities who fit the specific segments and personas being explored. This shared experience allowed for a deeper understanding of the unique perspectives of each patient segment.

While the cross-indication community provided a strong foundation for understanding patient needs, including additional cohorts in the mini-community would allow for further exploration as the client moves from concept into solution design. These additional cohorts could include people with a specific tumour type, those on a specific treatment or type of treatment, those with an oncogene mutation, or those in a specific cancer stage.

By incorporating these specific cohorts, the team can gather targeted insights around the particular challenges the solution aims to address, ensuring a better fit for the intended patient population. For example, people living in rural areas who do not have access to a multidisciplinary team may struggle to share knowledge with physicians located in different clinics or hospitals. To address this challenge, the team could create a cohort that includes nurses from multiple specialisms involved in the patient's care, allowing them to understand the complexities patients face when being managed by both an oncologist and a nephrologist.

These additional cohorts would provide valuable feedback on the solution design, user experience, and content, enabling the team to make informed decisions and adjustments that improve the overall fit and effectiveness of the solution. By engaging with patients who closely match the target audience, the team can ensure that the final product addresses the specific needs and preferences of the intended users, ultimately leading to better adoption and outcomes.

Evidence shows that if we don’t address the levels of activation in people living with a disease, they are unlikely to benefit from the interventions we provide; they may not take their medications as prescribed, they may miss appointments, their conditions may progress faster, and they may develop additional comorbidities that could have been prevented. By focusing on activation as a driver for the solutions we create, we can provide a personalised experience that empowers them to better manage their health, and get better outcomes.

Ready to deliver a more personalised experience that meets the needs of patients? Contact us to learn how PAM plus mini-communities can elevate your patient interactions.

About Merakoi
Merakoi partners with health and life sciences companies to build mini-communities that guide product development through continuous user insights. Our network of patients/advocates and proprietary community platform enable engaging, longitudinal co-creation between users and developers. The result is human-centered solutions that resonate powerfully in the real world.

Related reading: our primer on patient co-design

Seven years after being diagnosed with ulcerative colitis, a form of inflammatory bowel disease (IBD), I finally opened up about it online. I found my disease difficult to talk about openly due to what I perceived to be the embarrassing nature of it. I had been using Twitter under a pseudonym to engage with the IBD community before that, so I was already aware that many people with IBD had an unmet need for support and understanding.

My post went viral. People with IBD from all over the world were commenting on my post. I had hundreds of friend requests from the same people, and more besides.

Building IBDSuperHeroes, an organic mini-community

It was a very organic journey from that first post to patient advocacy. I’d already acknowledged the need for support and understanding, so I started writing blogs and raising awareness online. That was a pretty easy manoeuvre because I was working in social media marketing at the time. 

I set up IBDSuperHeroes with a small team of other people affected by IBD. We were essentially building a mini-community, bringing together people with shared experiences around a specific condition. We aimed to raise awareness and funds for IBD research. The need for a private group became apparent pretty quickly, so we set one up on Facebook. It was a beautiful sight. People were excited to have a space where they didn’t feel they needed to censor themselves. They didn’t have to tell a huge backstory to add context to a current situation like one might when talking to friends or family.

More and more people began advocating in the IBD space. Many people told me I had inspired them and given them the confidence they needed to make that leap. Over the years, I’ve seen many advocates come and go. I’ve also seen advocates come and stay.

Activating patient superheroes

Some advocates stick to story sharing and awareness raising. Others, like me, prioritise education. We learn as much as we can about disease management and disseminate information that we believe can help others. They might run communities, host podcasts, or just use social media. We’re the type of people who actively seek and get involved with IBD-related projects, from new digital health solutions to PPIE groups for IBD research or patient organisations. These people, who for merakoi are patient experts, have become respected and trusted contacts.

Harnessing mini-communities and cohorts at merakoi

As someone deeply engaged with the IBD online community, I've seen how it organically functions like the mini-communities merakoi builds, with different patient segments forming natural cohorts.

At merakoi, I get to apply my experience building IBDSuperHeroes to create purposeful patient communities for health innovators. I'm responsible for recruiting members, vetting them, getting them contracted, and scheduling all the interactions. Our digital platform makes this process seamless and efficient. I work closely with our partners to define the right cohorts for their needs, whether that's by treatment type, disease severity, online influence - you name it.

Essentially, I get to be a matchmaker, connecting the right patient voices to the right projects at the right time. And let me tell you, watching mini-community insights shape better health solutions never gets old.

It’s easy for me, as someone who is continually engaged with the online IBD community, to divide it into mini-communities. These mini-communities can be split in many different ways, such as:

From one-off input to continuous co-creation

I came to know merakoi early in its inception. I was a pharmaceutical company's lead patient consultant for an IBD project. They made the most of my marketing skills and disease experience. I was involved from the start, with everything from market research to survey design.

When the time came to dip into the aforementioned cohorts within my mini-communities, I’d got them ready-made. Lucky Pharma! I recruited patient experts for focus groups and patients and caregivers for surveys easily, because I knew my community and I had their trust. However, a great opportunity was potentially missed here.

Nearly all of the patients who got involved with the focus groups and patient survey were interested in doing more.

They asked me to let them know about future opportunities, whether they were part of the same project or unrelated. This was a lightbulb moment for me. These patients were eager to stay engaged, but the typical one-off project model didn't allow for that.

I know from working in patient recruitment for merakoi, that patients in all disease areas really do want to be involved as much as possible. Highly activated patients are keen to change the future of healthcare and patient support. They get involved with things like patient advisory groups, grant reviews, reading panels, or steering committees, which are usually a long-term commitment. But when Pharmaceutical or Biotech companies involve them, it’s usually a one-off project with a particular task, goal, and outcome. Once that has been achieved, the project is over and they have no idea what happens from there unless the drug hits the market several years later or the solution they worked on is released. 

Even lesser activated patients want to help where they can. I don’t doubt that money can be a driving factor in that, particularly because poor health can impact a person's ability to hold down a full-time job. But, some patients just enjoy feeling seen and heard. They want to tell their story and are keen to highlight gaps in the system or solutions designed for them. For some, there’s a genuine interest in the product, clinical trial, solution, app etc. They want to be involved further, but they are not given the opportunity. Others just love feeling like they’re contributing to the changes they want to see, whether it be in healthcare, diagnostics, digital health solutions, or disease management. It's an opportunity to be more than just a patient.

Ready to unleash the superpowers of patients?

It’s great that healthcare companies are recognising the value patients bring in product and service design. I love that more and more companies are involving patients during the design concept phase, rather than bringing them in to tick boxes once the design is complete. However, not continually engaging with potential users throughout the whole design phase results in the final product or service being unsuccessful. 

Patient insights being considered in the initial phases of product, service, or clinical trial design is great, but as it progresses, those insights get diluted. Ideally, there should be a continuous engagement and feedback loop. This ensures that when it’s time to release whatever the solution is, it’s real-world ready. Tried and tested, and then tried and tested again!

This engagement and feedback loop builds trust within the patient community, and if done right, will highlight to the community that you have a shared goal of improving healthcare. If members of the mini-community feel like valued and respected stakeholders, that positively impacts how the wider community sees you, and your product or service, long-term. 

At merakoi, we've seen the transformative power of continuous patient engagement through mini-communities and cohorts time and again. From clinical trials and digital therapeutics to medical devices, our partners have been able to create solutions that truly resonate with their target users by making patient input an integral part of the process from start to finish.

If you're ready to harness the superpowers of patients and create health solutions that hit the mark every time, we've got you. Contact me to learn more about building a mini-community for your next project. Together, let's unleash the potential of patient-partnered innovation!

About Merakoi
Merakoi partners with health and life sciences companies to build mini-communities that guide product development through continuous user insights. Our network of patients/advocates and proprietary community platform enable engaging, longitudinal co-creation between users and developers. The result is human-centered solutions that resonate powerfully in the real world.

Imagine a world where clinical trials prioritize the needs of patients, not solely focus on testing new treatments. Co-designing with patients should be the starting point for clinical trial design, but sometimes their voices get lost in the shuffle. As the people who stand to benefit the most from new therapies, patients have a lot to say about what works and what doesn't. That's why it's so important to involve them from the very beginning.

When we invite patients to be active co-designers in clinical trials, we're doing more than just checking a box. We're recognizing that their experiences, opinions, and concerns are valuable and can shape the way a trial is run. By having open and honest conversations with patients, we can tackle issues that might make it tough for them to join or stay in a study. This could be anything from transportation problems to worries about the trial procedures or unknown results. By understanding each patient's perspective, we can make the trial experience better for everyone. When patients feel good about participating, it can lead to faster enrollment and better retention throughout the study.

But patient engagement is about more than just making trials run smoothly. It's also about building trust and creating a shared goal of improving healthcare. When patients feel like their voices are heard and valued, they're more likely to become champions for clinical research in their communities. This can greatly impact how the public sees clinical trials, breaking down misconceptions and encouraging more people to get involved.

Redefining Insights: Embracing Next-Generation Methodologies

Traditional market research and advisory board methods have long been the foundation of insight gathering for clinical trials. However, as technology and data rapidly evolve, it's crucial to recognize the limitations of these approaches and explore next-generation methodologies.

Market Research:

• Expensive and time-consuming
• One-off, snapshot views of patient experiences
• Limited ability to iterate and adapt based on ongoing patient feedback

Advisory Boards:

• Stale and commoditized audiences
• Lack of genuine diversity and representation of trial-specific target populations
• Tendency for the same voices to be heard repeatedly

While these methods have served us well, they may not be leveraging the full potential of advances in software, big data, and AI. It's time to embrace new approaches that address these limitations and unlock the power of continuous patient insights.

Imagine a solution that offers:

• Cost-effective, iterative processes
• Ongoing engagement with diverse patient segments
• The ability to shape and validate designs for specific patient populations

By adopting next-generation methodologies, we can revolutionize the way we conduct clinical research, leading to more effective, efficient, and engaging trials. 

Mini-Communities: Your Direct Line to Patient Insights

So, how can we make patient engagement easier and more effective? Enter the idea of mini-communities for your clinical programme. At Merakoi, our mini-communities bring together diverse patients who are the perfect fit for a specific trial, giving researchers a direct line to the people who matter most.

Let's say a research team is planning a trial for a new treatment for multiple sclerosis (MS). They could create a mini-community of MS patients with different experiences and backgrounds. This could include patients who have participated in trials before, those who are new to the process, and even patients from different geographic regions or with different types of MS.

By engaging with this mini-community, the research team can get valuable insights at every stage of the trial design process. They can ask patients for feedback on the trial protocol, making sure it's feasible and patient-friendly. They can test different recruitment materials and strategies to see what resonates best with patients. And they can even involve patients in designing the trial itself, getting their input on everything from the number of visits required to the types of assessments used.

Cohorts: Unlocking the Power of Segmentation

One of the most powerful features of mini-communities is the ability to create cohorts, or subgroups, within the larger community. In our MS trial example, the research team could create cohorts based on patients' previous trial experience. They could compare insights from trial-savvy patients to those who are new to the process, identifying potential barriers and concerns for each group. This information can help the team tailor their approach to meet the needs of different patient populations.

Cohorts can also be used to gather insights on specific aspects of the trial experience. For example, the research team could create a cohort of patients who have used wearable devices in previous trials. By learning about these patients' experiences and preferences, the team can make informed decisions about incorporating wearables into their own trial design.

The value of cohorts in patient engagement cannot be overstated. By segmenting patients based on key characteristics or experiences, study teams can gain a more nuanced understanding of patient needs and preferences. This, in turn, allows for more targeted and effective trial design, ultimately leading to better recruitment, retention, and overall trial success.

Case Study: Enhancing a Skin Disease Trial through Patient Mini-Communities

Recently, I had the opportunity to work with a global clinical study team on enhancing a skin disease trial. As someone who has seen firsthand the challenges of patient recruitment and retention, I was excited to put the power of mini-communities and cohorts to the test.

We began by creating a mini-community of patients with the specific skin disease. Within this community, we established three main cohorts: patients who had previously participated in clinical trials and those who were new to the process, as well as a panel of patient advocates and expert. This allowed us to compare insights from trial-experienced patients with those who were trial-naive, giving us a more comprehensive understanding of patient perspectives.

One of the key issues we uncovered through our interviews with these cohorts was the impact of certain invasive procedures, such as skin biopsies, in the trial protocol. Trial-experienced patients were able to share their past experiences and concerns, while trial-naive patients expressed apprehension about these procedures. Patient advocates, though not necessarily the target population for the study, provided vital information on ensuring informed consent. By listening to these groups, we were able to work with the study team to refine the protocol, making it more patient-friendly without compromising scientific integrity.

Another crucial aspect of our mini-community was its ethnic and geographic diversity. We made sure to include patients of different skin colors and from various national healthcare systems. This diversity proved invaluable, as we discovered that patients with darker skin tones often faced delays in diagnosis due to the difficulty in visually identifying symptoms. Patients from countries with more robust healthcare systems reported having better access to information and support networks, while those from regions with less developed infrastructure struggled to find the help they needed. This knowledge allowed the study team to tailor our recruitment materials and patient support programs to better meet the needs of patients from different backgrounds.

For patients in the mini-community around this clinical study, the experience is extraordinarily rewarding:

"You have to make the process comfortable for participants. They're spending their time doing this not only to help themselves but really to advocate for others because there's a lot of people that have this condition that don't have a voice. And what we are trying to do is help them come out of that. They don't have to be an advocate themselves, but they should advocate for themselves at least. And that's so important. You want the process to be smooth sailing and change from the way it has been, and it can change."

Ashley Wall, Merakoi Patient Expert

At the end of the day, a successful clinical trial isn't just about the scientific results. It's also about making a real difference in patients' lives. By putting patients at the center of the process and working together to design better trials, we can unlock the full potential of clinical research. This means faster development of life-changing treatments and a brighter future for healthcare, one trial at a time.

For a comprehensive guide on patient engagement in clinical trial co-design, check out this valuable resource from PFMD: Patient Engagement in Clinical Trial Protocol Design (Merakoi is a contributor)

Ready to change the way we do clinical research? Contact us for more information about mini-communities.

About Merakoi
Merakoi partners with health and life sciences companies to build mini-communities that guide product development through continuous user insights. Our network of patients/advocates and proprietary community platform enable engaging, longitudinal co-creation between users and developers. The result is human-centered solutions that resonate powerfully in the real world.

Related reading: what patient co-design really means

Imagine you're a master chef. You've spent months crafting the perfect dish, a combination of exotic flavors that will revolutionize the culinary world. You're about to present it to a room full of eager foodies. But wait, you skipped the taste tests, and now, as the first bites are taken, you realize the dish isn't resonating. Panic sets in. Your masterpiece isn't a hit because you didn't understand your audience's palate.

This common scenario - perfecting the product without truly understanding the user - is exactly what we see happening in healthcare. Companies are often so focused on the endgame that they forget who they're playing for. The rush to reach significant milestones like regulatory approval or market launch can overshadow the key process of user research.

Teams become so consumed by these critical goals that they overlook the profound importance of involving patients and clinicians early and continuously throughout product development. Instead of integrating user research as a core element from conception through post-launch, it's often relegated to the final stages. This is particularly concerning because by the time the product is nearly ready to hit the market, opportunities for meaningful and cost-effective iterations are vastly reduced.

The result: solutions that may be clinically sound but don't fully meet the nuanced needs of the end-users they aim to serve.

A new perspective is essential—one that places continuous user research at the heart of creating healthcare solutions. This ensures those who the products are meant to help have a voice in the process every step of the way. In this article, we'll show how user research is not just about ticking boxes, but about connecting deeply with patient needs and experiences.

The User Research Journey

User research steers products via formative insights early on and summative validation later.

1. In the formative stages, research focuses on discovery. Deep user interviews and observation provide fundamental insights into user challenges, current workarounds, and context. These learnings form the basis for solutions designed to map to real user needs.
2. As concepts develop into prototypes, formative research continues through usability testing. Researchers gather user feedback, especially around pain points, to enable iterative UX refinement grounded in user models and expectations.
3. In the final stages, research becomes more summative, validating product readiness. User journey mapping and testing communication strategies reveal potential adoption barriers. Feedback-driven tweaks maximize clarity and accessibility for the target audience.
4. Post-launch, research returns to a formative role, powering ongoing enhancement. Quantitative usage data and qualitative insights directly from users fuel innovation rooted in real-world experience.

Integrating both formative, exploratory and summative, evaluative research allows products to evolve aligned with user perspectives throughout the development journey. Prioritizing these human-centered learnings helps ensure solutions resonate powerfully with the lives they aim to improve.

User Research Vs. Market Research: What's the Real Deal?

Let’s differentiate user research from two common tactics—market research and advisory boards.

Market research analyzes demographics, competitors, trends—crucial for positioning.

Advisory boards offer valuable but limited perspectives. Unless well provisioned, they likely represent the industry more than your users.

User research gets personal with real users. It uncovers deep insights into their everyday reality and what they truly need. This nitty-gritty understanding is impossible to glean from surface-level research or semi-removed advisors. You need boots-on-the-ground user research to create products that fit seamlessly into your customers’ lives. No amount of indirect data can replace or replicate the insight derived from engaging directly with users and prospective users themselves.

Seeing Results: How User Research Pays Off

Incorporating user research into product development is essential for achieving key performance indicators like adoption and adherence. But how exactly does it pay off? Here are a couple examples:

• A global clinical study team sought to improve patient recruitment and protocol adherence for a rare skin disease trial. By interviewing trial naive and trial experienced patients and their caregivers, they uncovered insights that informed a more patient-friendly study design and recruitment materials.

• A commercial pharma team struggled with 50% medication adherence dropoff after launch. Ethnographic research into prescribed patients' lives identified confusion around proper dosage and communication with clinicians as a key driver.

Products designed collaboratively with end users are more intuitive, more convenient, and ultimately more impactful. The solution that emerges is not just built for users but built with them.

Mini-Communities for User Research

If you're sold on the value of user research, you might think of hiring a consultancy. But let me propose an alternative approach that harnesses the collective power of users.

At Merakoi, we run mini-communities -- small pools of patients that provide ongoing insights and feedback. Unlike sporadic focus groups, mini-communities persist over months or years as integral partners in product development. And, unlike standing advisory boards, turnover is encouraging to bring fresh voices.

Mini-communities may consist of several different cohorts of users, such as:

• Experienced users already familiar with a product or condition
• Naive users new to a product or condition
• Champions or influencers who can promote the product
• Specific demographics like newly diagnosed, fit vs. unfit, healthcare system, or age/gender

This diversity of perspectives ensures feedback represents the full spectrum of stakeholders.

Let's see how this worked for one promising digital health startup. The startup had secured regulatory approval in German (DiGa) and early commercial success with their digital solution for heart failure management. However, they knew that to achieve their vision of empowering patients worldwide, they needed to expand beyond a high-touch personal monitoring model.

The startup turned to Merakoi for mini-communities to continually guide development of a self-management program. Here's how it went:

1. Recruited a cohort of experienced users who had used the digital therapeutic for over 6 months. This gave insights into the high-touch monitoring model.
2. Also recruited a second cohort of naive users - those newly diagnosed with a less severe grade of heart failure. This represented their target expansion demographic.
3. Conducted remote interviews with both cohorts to understand their different needs and perspectives on managing their condition daily.
4. As the self-management software was built, both cohorts tested prototypes and provided feedback from their distinct vantage points.
5. Reviewed marketing ideas and messaging with each group. Experienced users valued interoperability of devices while newer users wanted more education.
6. After launch, the standing mini-communities continued providing insights into real-world usage and enhancement ideas.

My final takeaway: the future of human-centered healthcare is bright when we embrace user research not as an obligation, but as an opportunity to meaningfully connect with and empower the people we seek to help.

About Merakoi
Merakoi partners with health and life sciences companies to build mini-communities that guide product development through continuous user insights. Our network of patients/advocates and proprietary community platform enable engaging, longitudinal co-creation between users and developers. The result is human-centered solutions that resonate powerfully in the real world.

Ready to create health solutions that resonate? Contact us for more information about mini-communities.