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

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.