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

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

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

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

AI Is Changing How We Work—And How We Heal

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

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

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

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

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

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

AI as a Healthcare Companion

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

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

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

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

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

The Ethics of AI in Healthcare

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

But AI breaks this ethical comfort zone.

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

That’s a topic for a future post.

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

Resources & Further Reading

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

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

About Jeff TenBroeck

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

About Merakoi

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

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

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!

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?