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

In honor of Colorectal Cancer (CRC) Awareness Month, we were delighted to host Stage IV survivor and merakoi patient expert, Stacy Hurt, as our LinkedIn Live guest on Thursday, March 17th, 2022.

A 20+ year award-winning healthcare executive, Stacy has worked cross-functionally in physician practice management and pharma across sales, marketing, training, operations, customer service, IT, and human resources.

Along the way of building her career, Stacy also successfully navigated two devastating diagnoses: her younger son’s rare disease, which renders him intellectually and developmentally disabled and requires 24/7 care, and her own survivorship of stage IV colorectal cancer.

Stacy now serves as a global patient advocate and is a Patient Engagement Consultant representing patients as stakeholders in clinical decision making, policy formation, health IT user experience, and pharma/biotech drug development.

In this post, we highlight some of the key points from our discussion. It is just a small sample of the fascinating conversation we had with Stacy, so if you are interested in learning more, be sure to watch the recording on our YouTube channel.

On Being A Voice For Others

Stacy has recently been recognized by Medika Life as one of the Top 50 Most Influential Voices of Healthcare - an honor which Stacy was quick to point out is not about “tooting our own horn.” Rather, “being on that list just continues the work that we need to do to change our system for the better.”

“Being on that list is me representing patients and caregivers because that’s what I do every day. I’m just the medium. I'm just the go-between the patient and their journey and what they're going through and how they need our system to work better for them and me taking that to people who need to hear it and make the changes. I'm just continuing the work of getting these stories out there.”

The story of Stacy’s own advocacy journey began when her younger son, Emmett was diagnosed with a very rare chromosome abnormality.  It is a rare disease that leaves him nonverbal, nonambulatory, and in need of care 24 hours a day. Stacy had taken a break from her career as a healthcare executive to take care of her son’s needs, but then she was hit with her own diagnosis of stage four colorectal cancer shortly after returning to work.

This double blow to Stacy’s family’s healthcare precipitated a change in career, and she described for us how she has “continued forward to this sort of emerging career that I'm developing as a patient engagement consultant and really connecting the dots or closing the gaps between those who work in health care and the ultimate end-user, which is the consumer and the patient who are the recipient of those services.”

Peer To Peer Learning and Support

Stacy shared her experience battling the insurance companies to get her son the nursing services, medication, and equipment he needed. Her professional background stood her in good stead. 

“Because I worked in healthcare, I knew the verbiage and what you had to say to get these things approved and the hoops that you had to jump through to get these things approved,” she explained.So I sort of became an expert at appeals and then I started sharing that knowledge across the rare disease community.”

After being diagnosed with Stage IV cancer, Stacy found herself sharing her own survival playbook with the cancer community and giving advice to patients appealing insurance decisions.

From these beginnings, Stacy’s influence and impact in patient communities grew. And when she came through her cancer diagnosis and treatment, which she calls  “a complete miracle,” she began to look around and see that technology is going to change everything. 

“Technology is going to be that third voice in the room. When there's the physician and the patient, technology is going to be that third party in the continuum of care.”

“I think when you talk about that third voice in the room and people get a little freaked out by artificial intelligence. The perception is Big Brother. And this is part of digital literacy, health literacy, tech literacy for companies to take that extra step and make consumers understand that they can trust A.I., that it's a friend that is here to help your care and make your care better.”

“We have a huge trust problem in the world right now. We need to overcome that for technology.”

“You're only as good as what you understand about your plan and what you can execute. The doctor can give you the best plan in the world, but if you don't understand it, if you're not able to follow it, if you don't have the tools or the resources necessary to do it, to execute it, forget that plan. It is not going to happen.”

Addressing The Digital Care Gap

“If we're true leaders, then we're in the space that we are. We need to go 180 degrees to the space where we are not and figure out what those people's challenges are, what their problems are, and what their day-to-day life looks like. Assuming people have broadband access -  people are going to libraries and coffee shops to get on broadband. That's the reality in an underserved area every day. And taking a bus or a subway or other public transit to even get to that place of access. And if we're not taking that into account in every single solution we develop, we're missing it.”

More Than The Token Patient

One thing that Stacy is passionate about is that involving patients in healthcare design should never be tokenistic or transactional. It needs to go much deeper. 

Calling “upon every company out there to have a patient, someone who identifies as a patient on your executive team, on your leadership team,” Stacy pointed out that discounting or marginalizing patients due to perceived limitations means that “you're missing an entire perspective of lived experience.”

“The lived experience is not something that you can teach or have a one-day training program on.”

“That patient has to be part of your everyday workflows, your everyday drug development, policy development, strategy development within a company,” she said. 

This is not to discount making accommodations when needed, but these days more than ever it is easy to do so. 

“We now know we can do Zoom meetings, we can work from home and not miss a beat and be every bit as efficient,” Stacy pointed out. “So we know that's possible. But understanding that, yes, we do have disabilities. We do have certain things that we have to deal with. But those are easy to work with. Make the accommodations and make sure you're including that patient-caregiver lived experience voice.”

Citing the example of attending the annual ASCO (American Society of Clinical Oncology) conference, which extends free patient advocate registration, and also provides a dedicated lounge for patients, Stacy suggested that oncologists should visit patients in the lounge. “Come over and sit down and have lunch with us and talk to us. And let's just have a little fireside chat. And then at the oncologist lounge, have patients come in.”

Taking this suggestion further, Stacy presented us with a  scenario where “every panel on stage, instead of just having a patient get up and speak, every panel should be integrated. Every panel should be patients and oncologists and researchers up there talking together about what's important.”

This of course doesn’t just apply to conferences. It goes across the board. 

 “Every patient experience conversation should have a patient.”

Who Owns Patient Data?

When it comes to digital health, data is the fuel that drives the engine, but the question of ownership of patient data is one that is hotly debated.

Stacy is unequivocal that patients own their own data. “This is our data. And of course, every pharmaceutical company, biotech company, health tech company is capturing data. Patients need to know that. You need to tell us that you're doing that and you need to tell us what you're using that data for - if you're selling that data.”

Using the analogy of your best friend borrowing your car, Stacy explained “it’s okay that your best friend borrows your car. Your best friend needs a ride, has to get to an appointment and wants to borrow your car. Just tell me what you need it for. Don't make me look in my driveway and see it's gone. You need to have that conversation at the beginning.”

On the topic of data ownership, a question was put to Stacy from the audience, “what would you personally do with your data?” Stacy responded by saying, “every day I try to figure out why I did everything right and my son suffers and I got cancer. I mean, we'll never know the answers. Things just happen. You know it's genetics. But I think more importantly, what I did right, that I could help somebody else with. So everybody always asked me, how did you beat stage four cancer? And again, I don't know. My oncologist doesn't even know. would I would look at every single thing that I've done in my son's journey and in my journey and try to help somebody else. That would be it. That would be the number one thing that I would do.”

Take Charge Of Your Health. Don't Wait For It To Take Charge Of You. 

We concluded our conversation by asking Stacy to share a message for colorectal cancer awareness month. 

“Get screened. So my biggest thing with colorectal cancer and colon cancer, they're interchangeable, is to initiate a conversation with your healthcare professional about screening. In the US, the screening age was just lowered to 45 and that's due to the incidence in colorectal cancer. In young people age 20 to 49, it's way up. So if nothing else, have a conversation with your doctor about your options for screening. Don't be afraid. No shame, no stigma. Poop is beautiful. Our butts are beautiful. No part of your body is off-limits. Your poop and your bloodwork tell your whole life story. So please from a stage four survivor who never saw it coming, who was the healthiest person she knew, out running the day before her colonoscopy. Please initiate a conversation with your doctor about getting screened for colorectal cancer.”