Nope.

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

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

Now think about healthcare.

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

Why?

Ask Someone With Scars

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

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

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

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

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

Stop Getting Stuck in Advocacy Mode

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

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

And then… move on.

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

But what if you flipped the script?

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

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

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

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

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

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

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

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

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

Mini-Communities. Max Value.

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

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

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

The Future is Patient-Consulted

So here’s the takeaway:

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

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

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

Best,
Kevin

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

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

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

About Merakoi

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

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.

Ashley's journey through a clinical trial for atopic dermatitis was far from ideal. As a patient living with this condition, she bravely decided to participate, hoping to contribute to the development of new treatments and improve the lives of others like her. However, her experience fell short of expectations. Feeling unprepared and unsupported, Ashley's clinical trial left her feeling like just another number, rather than a valued partner in the process.

In her own words, Ashley shared, "I remember just through my clinical trial experience, it ended very abruptly, and I didn't know what my next steps were or how I was going to continue going on this medication. And so that left me, you know, feeling very isolated and alone and like, wow, I really did just feel like a number in this clinical trial."

This disappointing reality is one that many first-time clinical study participants face, leaving them feeling disconnected and unappreciated. Likewise, many study teams are nervous about the implications of treating patients like just another data point. They ask important questions about the risks this brings in failing to recruit patients for their study, losing patients to dropoff in the middle of the trial, or not winning consent for important substudies and data sharing that are essential parts of today's complex studies. How does treating patients like numbers cloud our views of how they experience trials, who should be in control, and how we should we relate to them?

Reimagining Ashley's Clinical Trial Journey

In an ideal world, Ashley's clinical trial experience would have been a far cry from the disappointment and isolation she felt. Instead of feeling like just another number, she would have been welcomed as a valued partner in the research process from the very beginning.

1. Upon expressing interest in participating, Ashley would have received a warm invitation to join the trial, along with easy to understand and comprehensive information about what to expect. The study team would have taken the time to understand her unique needs, concerns, and preferences, ensuring that the trial design was tailored to her specific circumstances.
2. As Ashley embarked on her trial journey, she would have been treated as a true superhero – a courageous individual willing to contribute to the advancement of medical research for the benefit of herself and countless others living with atopic dermatitis. This recognition would have been woven throughout every interaction, from the personalized welcome pack she received to the genuine appreciation expressed by the study staff.
3. Throughout the trial, Ashley would have felt supported, informed, and empowered. Regular check-ins with the study team would have provided opportunities for her to ask questions, share her experiences, and receive updates on the trial's progress. These interactions would have been characterized by transparency and a genuine commitment to her well-being.
4. The trial site itself would have been designed with patient comfort and convenience in mind. From the moment Ashley stepped through the doors, she would have been greeted by a warm and inviting atmosphere, with comfortable waiting areas, complimentary refreshments, and a range of accessible amenities. Transportation assistance would have been offered to ensure that participating in the trial was as seamless and stress-free as possible.
5. Throughout her journey, Ashley would have had access to a wealth of educational resources and support services. From informative brochures and videos to peer support groups and one-on-one counseling, she would have been empowered to take an active role in her own health journey. These resources would have not only enhanced her understanding of the trial process but also fostered a sense of connection and community with other participants.
6. As the trial progressed, Ashley's contributions would have been continuously acknowledged and celebrated. Small gestures of appreciation, such as personalized thank-you notes and milestone celebrations, would have reinforced the value of her participation and the importance of her role as a patient superhero. These moments of recognition would have served as a powerful motivator, encouraging Ashley to stay engaged and committed to the trial.
7. Upon completion of the trial, Ashley would have been given the choice to receive the study findings in an easily comprehensible way, which she could then share with her community if she desired. Not only would this help disseminate the study findings, but it would also encourage conversation about the trial and position the sponsor in a positive light due to the overall positive experience.

For Ashley, this reimagined clinical trial experience would have been a world apart from the abrupt and isolating reality she faced. Instead of feeling abandoned and uncertain about her future, she would have emerged from the trial feeling valued, supported, and empowered. Her journey would have been an example of what is possible when patients are placed at the heart of clinical research, and when their needs and experiences are given the attention and respect they deserve.

Patients as Partners: The Key to Successful Clinical Trials

Ashley's story highlights the stark contrast between a traditional, patient-agnostic trial experience and the potential of a patient-centric approach. By reimagining her journey, we can see the potential of empowering patients as partners in the clinical trial process.

But how can we make this vision a reality? The answer lies in embracing co-design and patient mini-communities. By bringing together diverse groups of patients who are a good fit for a specific trial, researchers can gain valuable insights at every stage of the design process. Mini-communities allow for open and honest conversations about the challenges and concerns patients face, enabling study teams to create trials that are more engaging from enrolment through to completion.

Imagine how different Ashley's experience could have been if she had been part of a mini-community for her atopic dermatitis trial. As sorts of permutations are possible in co-design, but a simple two cohort approach would suffice. As a first-time trial participant, Ashley would have been invited to a cohort of trial inexperienced patients. By sharing her insights and collaborating with other patients, she could help shape the trial design to better meet the needs and expectations of participants and, in particular, addressing barriers to enrollment. Meanwhile, a second cohort would have consisted of AD patients with previous clinical trial experience. This cohort enables the study team to build on the real-life learnings of previous studies, reducing the risk of repeating others' mistakes and integrating opportunities to improve the study.

Through this co-design approach, the mini-community would enable a more comprehensive understanding of patient needs, ultimately resulting in a trial that is more engaging, inclusive, and effective. Ashley and her fellow participants would feel valued and heard throughout the process, knowing that their insights are making a real difference in the trial design. I know these are real benefits, and to be clear, when I say patients should be "partners," "co-designers," "collaborators," or "experts," I'm speaking metaphorically. Most patients don't have the scientific knowledge, regulatory understanding, or clinical expertise of researchers. So why take the risk? Because as imperfect as the analogy is, working with patients is easiest if you truly think of them as equal partners rather than passive participants or validators of your opinions. 

As a patient experience strategist, I have seen firsthand how pharmaceutical teams benefit from involving patients as partners in various aspects of their work. By collaborating with patients, teams can gain valuable insights into the patient journey, identify unmet needs, and develop solutions that truly resonate with the patient community. Even teams with previous experience working with patients gain value with every round of patient collaboration, as patient needs are continually evolving in tandem with our own understanding of diseases and the treatment landscape.

Embrace Mini-Communities for Your Next Study

To all the teams running clinical trials: it's time to take patient engagement to the next level. Don't just involve patients; embrace the power of mini-communities and co-design. By partnering with Merakoi and their innovative mini-community approach, you can unlock the full potential of patient insights and create trials that truly prioritize the needs and experiences of those who matter most.

To learn more about patient co-design in clinical trials, I recommend reading Dani Benson's insightful blog post, Unleashing Patient Power: Co-Design for Better Trials . Her guide explores the various aspects of patient involvement in clinical trial design and provides valuable insights for teams looking to adopt a more collaborative approach.

Contact us to discuss how to incorporate the voice of patients into your clinical trials.

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 Is Patient Co-Design?

Effective Patient-Reported Outcome (PRO) measures in clinical trials can provide a significant competitive advantage for pharmaceutical companies. Demonstrating improvement in key symptom domains that competitors have not proven offers a powerful differentiation in the market, attracting both patients and prescribers to new treatment options. By investing in robust PRO development and implementation, companies can strengthen their product positioning and drive commercial success.

In the pursuit of patient-centred healthcare, harnessing the wisdom and expertise of people living with multiple sclerosis (PwMS) is crucial to drive transformative change. New MS treatment options have successfully shown reduced functional impairment through fewer disability-worsening events, which is seen by PwMS as a major achievement. In pivotal clinical trials, multiple PRO measurements are being included to understand the impact of treatment on other symptoms like Fatigue, Cognition, Pain, and Depression.

However, there is doubt about the robustness of some of these tools, raising concerns about the true meaningfulness of the data obtained. For PwMS, those 4 domains provide major challenges, and any treatment that would impact these symptoms is highly welcomed.

To assess the alignment of 6 PROs with regulatory and scientific requirements on PRO structure/development, under the leadership of merakoi a diverse and representative panel of PwMS evaluated the degree to which the PROs reflect disease aspects they perceive as important. A patient-led qualitative market research was performed to gain insights and recommendations from PwMS, better understand the impact of those 4 domains on their daily life and evaluate the degree to which the 6 most used PROs in MS pivotal trials reflect disease aspects they perceive as important.

Key Findings: Perspectives from MS Patients

Our research journey uncovered invaluable insights from PwMS, illuminating the complex realities of living with this chronic condition. Here's a closer look at the outcomes:

Fatigue: Beyond Physical Exhaustion

MS-related fatigue emerged as a pervasive challenge impacting daily life. It is always present and unpredictable, so it affects normal day-to-day activities. PwMS emphasized the need for PRO measures that capture the diverse dimensions of fatigue, including cognitive and emotional impacts, to inform more effective interventions.

Cognition: Navigating Cognitive Challenges

Cognitive impairment in MS presents varied manifestations. The progression of cognition is feared, impacting many areas from daily activities to a sense of purpose in life. Patients emphasized the importance of tailored assessments to capture nuances in cognitive function, guiding the development of more precise measurement tools.

Pain: Understanding the Spectrum of Discomfort

Pain comes not from one, but multiple sources. It is usually invisible and half of the PwMS interviewed experience pain daily. Pain in MS spans a spectrum of sensations. PwMS emphasized the need for personalized pain management strategies, supported by PRO measures that account for the subjective nature and varied types of pain experienced.

Depression: Addressing Mental Health Needs

Depression is highly interconnected with the other domains (and is often exacerbated by them) and in many cases requires professional intervention. Depression is a significant comorbidity in MS, impacting emotional well-being. Patients stressed the importance of PRO measures that assess emotional distress comprehensively, facilitating holistic care approaches. Realizing that depression is not all the time experienced but can come in waves.

An Innovative Approach to PRO Research

To uncover these rich patient insights, merakoi employed a unique methodology that empowered PwMS as research partners:

• Recruited a diverse mini-community of 25 PwMS, carefully selected to represent different geographies, ages, genders, and ethnicities
• Trained MS patient experts to conduct peer-to-peer interviews, enabling open and authentic conversations
• Leveraged the mini-community for agile, iterative research, with the ability to dive deeper into emerging topics

By harnessing the power of patient-led research within an engaged community, unparalleled access was gained to the real-world experiences, needs, and priorities of PwMS. These insights can inform the refinement of PRO measures and equip pharma partners with an evidence-base to enhance clinical trials and product development.

Recommendations for Integrating Patient Perspectives

Building on these insights, here are strategic recommendations for health companies seeking to integrate patient perspectives into their innovation processes:

• Refine PRO Measures: Develop and refine PRO measures to capture the multifaceted experiences of PwMS ensuring comprehensive assessments that inform personalized care.
• Tailor Interventions: Design health solutions that resonate with PwMS experiences, addressing specific challenges related to fatigue, cognition, pain, and mental health.
• Enhance Trial Designs: Utilize patient-centred PRO measures to enhance clinical trial designs, leading to more meaningful outcomes and informed decision-making.
• Promote Holistic Care: Embrace holistic care approaches that prioritize patient well-being beyond symptom management, integrating mental health support into MS care strategies.

Elevate the Patient Voice with Merakoi

Ready to infuse patient perspectives across your product lifecycle? Merakoi can help.

From early-stage development to clinical trials and commercialization, Merakoi provides the patient-generated evidence and insights needed to create truly patient beneficial health innovations. Our unique mix of patient expertise, agile research methodologies, and scientific rigor helps optimize PROs, enhance trial design, and build compelling value propositions. Merakoi can overcome the challenges associated with patient engagement e.g. identifying, educating and compensating patients and patient experts at fair market values.

Partnering with merakoi means:

• Co-creating solutions with patients, caregivers, and HCPs that address real-world needs and improve quality of life.
• Integrating patient-led PRO measures to drive impactful clinical trials and advance treatment options.
• Fostering a culture of inclusivity and empowerment by enabling individuals with MS to contribute meaningfully to healthcare innovation.

Don't miss the opportunity to differentiate your pipeline. Contact us to discuss how to incorporate the voice of patients into your programs.

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.