Lyme journeys are a major component of the Health+ Lyme Disease Human-Centered Design (HCD) Report. Coforma’s research team surfaced two significant Lyme journeys around the experiences patients encounter as they seek diagnosis and treatment for persistent symptoms of Lyme disease.
Health+ Lyme Disease Project Background
Lyme disease is the most common vector-borne disease in the US. Due to a wide variety of symptoms, people with Lyme disease today are often misdiagnosed, overlooked, and not taken seriously, leading to damaging consequences to their health.
Through research with Lyme patients, caregivers, leaders, and medical professionals, Health+ Lyme Disease identifies pressing health challenges patients face throughout their journey with Lyme disease and responds to those insights by accelerating innovative solutions to increase the quality of life for individuals with Lyme disease.
The Health+ Lyme Disease program cycle is supporting the LymeX Innovation Accelerator (LymeX), a $25 million public-private partnership between the Department of Health and Human Services (HHS) and the Steven & Alexandra Cohen Foundation.
Creating the Journey Maps
A number of inputs informed the journey maps in the report, totaling 698 hours of discovery:
Desk research: We read articles and white papers, and listened to podcasts to understand multiple perspectives of today’s Lyme landscape.
Social listening: We joined public Lyme community groups on Reddit, Facebook, and other social media platforms to get a glimpse at candid dialogue in the Lyme community that brought to life common burdens, encouragement, and guidance.
Workshops: We gathered healthcare providers, Lyme leaders, caregivers, and patients for a multi-part, virtual workshop to further understand the participants’ stories, shared understandings, and sometimes differing opinions.
Interviews: We had one-on-one, hour-long conversations with healthcare providers, Lyme leaders, caregivers, and patients to understand their pain points, successes, and overall experience with Lyme.
To build the journey maps, we focused specifically on the various patient stories from our interviews detailing people’s experiences beginning with their initial Lyme contact through their current management of Lyme symptoms.
This information allowed us to build dynamic journeys that help frame patients’ experiences with Lyme today. Because Lyme experiences can be complex, lasting anywhere from a couple of weeks to multiple decades, we mapped two distinct journeys: “The Diagnostic Journey” and “Treatment Journey for Persistent Symptoms.”
The Diagnostic Journey
The Lyme diagnostic journey is a crucial and influential phase in the patient’s overall encounter with Lyme disease. When searching for a diagnosis, a patient and/or caregiver can experience discrimination, misdiagnoses, and mistreatment, forcing them to become an advocate and seek answers for their Lyme symptoms.
“At that time I took my condition into my own hands, and I just was sort of grasping at straws.” —Patient
The prolonged diagnosis process can be so damaging and traumatic to the patient that it can leave them more vulnerable to Lyme’s impact on their health. Not understanding the cause of their symptoms can be costly in other aspects of their life as well.
“My doctor said that I was the problem, and my parents believed him. It broke my heart. After that, I was just so angry, I was 14, and nobody believed me. It was just torture.” —Patient
By mapping out the Lyme diagnostic journey, we uncover the patient and caregivers’ pain points and key clinician touch points. These touch points show us where processes can be improved and streamlined to help ease the suffering that patients might endure throughout their healthcare journey.
How We Formed the Diagnostic Journey Map
In our interviews with patients, we asked them to walk through their initial awareness of their symptoms when they were diagnosed accurately with Lyme. We used these insights to build out multiple paths that illustrated the different experiences they had at this stage: the costly specialist cycles they might get stuck in, the misdiagnoses backtracking their progress, and the pivotal moment that prompted the need for self-advocacy. By zooming out on this overall structure, we created explicit visual, written, and audio content that shows how complex the journey can be.
After we laid out the different paths a patient might travel to reach a diagnosis, we used our research and clinician interviews to bring further context and additional perspectives to the journey, such as the consequences of delayed diagnosis.
“It can get a bit frustrating. If things were caught a little bit earlier, people wouldn’t have to suffer as much. They could recover quicker from treatment.” —Clinician
We also included a journey key that codes the pain points, self-advocacy moments, positive endpoints, and negative endpoints for patients.
The Treatment Journey Map for Persistent Symptoms
The treatment journey for persistent symptoms is an ongoing, everyday experience for some Lyme patients. Currently, there are no concise answers or guidance around treating the persistent symptoms of Lyme—a situation that often forces patients to take care coordination into their own hands.
Adding to the responsibility of coordinating and advocating for their care, patients may also face Lyme’s severe, persistent symptoms and treatment side effects that can throw off their sense of normalcy. Because of this loss of normalcy and the lack of understanding around Lyme from patients’ communities, they often feel isolated in their suffering and can experience severe mental health setbacks.
“I had very little support from my family because they didn’t understand the disease. They couldn’t fathom that I could have a condition that could be so debilitating yet not recognized by doctors. So that was really hard with family.” —Patient
Many patients adapt their lives to their condition and Lyme symptoms. The journey map for persistent symptoms highlights opportunities to provide better access to sufficient care and improve the support networks that serve patients.
How We Formed the Treatment Journey Map for Persistent Symptoms
In our interviews, we asked the patients with persistent symptoms to describe their day-to-day with Lyme, how they found their current treatment, and what they still struggle with when managing Lyme today. We also asked the healthcare providers currently treating persistent patients about their experience with the multitude of patients they have seen and treated.
We learned that the treatment journey map for persistent symptoms is a bit more open-ended than the diagnostic journey map from those interviews. While the diagnostic journey eventually leads to the patient either being correctly diagnosed with Lyme or to them abandoning their pursuit for diagnosis, we formed the treatment journey map, aside from a few exceptions, to end in two primary cycles: “The Switching Treatments and Doctors Cycle” and “The Engages in Ongoing Care Maintenance Cycle.”
“There are some people that I don’t know if we’ll ever get fully to optimal health, we’re just trying to support them and lower that inflammation they’re under and, you know, get them a better quality of life.” —Healthcare provider
After we formed the journey map, we used our findings from the Lyme leaders’ interviews to cross-check our map and provide further insight into endpoints on this journey. Today, many Lyme leaders have Lyme and are still actively stuck in the management cycle, adapting their condition to their leadership role, further confirming our maps. Other leaders work to provide resources and new policies to help patients stuck in these cycles.
As long as the symptoms are persistent, the patients will be stuck in this constant journey of adapting their lives to their situation, sometimes sacrificing their relationships, life plans, and mental health to do so. We also included a journey key that codes the pain points, self-advocacy moments, positive endpoints, and negative endpoints for the patients in the journey.
How the Journey Maps Can Help
The journey maps provide an understanding of the patient experience, including where they started and where they are now in their Lyme journey.
These maps can be used to build a more profound empathy for the Lyme community, provide guidance for patients along their path, help educate the public and the medical community on the Lyme patient experience, and to spur insight-driven innovation around diagnostic and treatment solutions built around patient experiences in the future.
Read the Report
Journey maps are just one component of the Health+ Lyme Disease Human-Centered Design Report. We have provided accessible ways to examine the content through visual, written, and voice formats for the journey maps. The report’s findings also include in-depth patient archetypes, more detailed narrative journeys for each of the journey maps, opportunity areas, and recommendations that can be used to improve the lives of those living with Lyme.