Health+ Lyme Disease Human-Centered Design Report Highlights Opportunity Areas and Recommendations
The Health+ Lyme Disease Human-Centered Design (HCD) Report articulates diverse patient experiences from diagnosis through treatment. The report outlines opportunity areas across the patient experience and recommendations that may improve the lives of people living with Lyme.
Health+ Lyme Disease Project Background and Approach
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 Human-Centered Design Report includes in-depth patient archetypes, journeys, opportunities, and recommendations that can be used to improve the lives of those living with Lyme.
Read the Human-Centered Design Report
Creating the Opportunity Areas
The numerous opportunities for improving experiences with Lyme disease first arose from desk research conducted at the beginning of the project. After gaining a thorough understanding of today’s Lyme landscape, we used workshops, social listening, and interviews with patients, clinicians, and Lyme leaders to learn more about the gravity and priority of their needs. We sorted the opportunities into four main areas, focusing on awareness, diagnosis, care coordination, and life with Lyme.
“The consequences can’t be overestimated, now that Lyme disease has become an almost unparalleled threat to regular American life …. Really anyone — regardless of age, gender, political interest, affluence — can touch a piece of grass and get a tick on them.”
— Bennett Nemser, Epidemiologist and Senior Program Officer of the Cohen Lyme and Tickborne Disease Initiative at the Steven & Alexandra Cohen Foundation
“Lyme Disease is Baffling, Even to Experts,” The Atlantic
The four opportunity areas cover the experiences of Lyme disease from diagnosis through treatments, including issues like lack of awareness within patients’ communities and the challenges patients experience in managing their lives with persistent Lyme symptoms. These focused opportunities can be used to help bring awareness to the needs in the Lyme community, develop innovative solutions, and provide clear guidance to others looking to help improve Lyme experiences.
Opportunity Area 1: Broader Awareness of Lyme Disease
A deep level of Lyme awareness is lacking from initial prevention through treatment. As instances of Lyme disease increase, the risk of exposure becomes higher, and increased awareness of the vector-borne illness becomes even more essential.
In addition to regions known for ticks, Americans encounter tick exposures in places they don’t expect — on the job, while gardening or playing in the backyard, in urban areas, and even in locations not historically associated with Lyme.
“I didn’t even know what a tick was. I lived in Southern California by the beach. You know, people never talked about it. I never heard of it.”
— Patient
Because of limited, and in some cases, lack of knowledge of Lyme’s complexity, initial contact with a tick can be taken too lightly, leading to individuals not seeking the more effective, timely treatments until they experience symptoms that are too disruptive to ignore.
Atypical tick encounters, such as those that don’t result in a “bull’s-eye” rash, can also be downplayed by doctors when patients report them. This results in delayed diagnosis and missed opportunities to treat Lyme before the onset of symptoms.
“Yeah, I think what’s mind-boggling is the fact that not a single doctor even asked about Lyme disease, not one brought it up, and I wasn’t aware enough to ask them.”
— Patient
When a patient is finally diagnosed with Lyme, many experience discrimination from their providers and communities, stemming from a lack of understanding. The good news is that Lyme and its complex consequences can be prevented.
Recommendation Summary for this Opportunity Area
Lyme awareness needs to increase at every stage of the disease, from initial prevention awareness to medical understanding of how symptoms present themselves. As tick habitats spread due to climate change and other unknown factors, the public and the medical community need to become aware of the risk in non-endemic and urban areas. Beyond a general awareness of the existence of tick habitats and their proximity to people’s activity, Americans need to be made aware and mindful of the potential severity of the condition and how to act if they come into contact with a tick or experience Lyme symptoms.
Efforts to increase awareness among the public and medical professionals across the US can help prevent Lyme disease infection and improve disease identification.
Opportunity Area 2: An Accelerated Diagnostic Process
Because Lyme’s symptoms are diverse, misleading, and often incorrectly attributed to other illnesses, patients can face a long diagnostic journey. Just as rapid identification of symptoms and treatment can result in positive outcomes for patients, delayed diagnosis and misdiagnosis may lead to more severe and prolonged symptoms.
The lack of awareness surrounding Lyme disease prevents both patients and healthcare professionals from having a smooth and efficient diagnostic process. Patients whose diagnosis is delayed for any reason (e.g., misdiagnosis, their own or their doctor’s lack of knowledge) can experience such severe Lyme-related disturbances in their lives that they can end up financially, emotionally, and physically devastated with little reserves left to manage the disease itself.
Additionally, they may experience stigmatization around mental health issues and be ignored by their doctors, leaving them to manage their symptoms alone, feeling isolated and abandoned.
“I spent two weeks at the Mayo Clinic before my diagnosis of Lyme disease and was sent home with a diagnosis of idiopathic pancreatitis and depression. And I can say I was not depressed before I got to Mayo.”
— Patient
Such misdiagnosis of Lyme is common and can be so severe that some patients even undergo unnecessary surgeries and treatments for illnesses they do not have, further devastating their health condition.
“Instead of recovering after the surgeries, I just got sicker and sicker and sicker. I don’t know if sicker is the right word, but it took seven and a half years to get to an accurate diagnosis of Lyme disease and multiple tick-borne infections.”
— Patient
Delayed diagnosis, misdiagnosis, and the pervasive inconsistency of Lyme awareness and diagnostics within the medical community lead patients to become their own advocates or look for answers to their symptoms beyond formalized medicine. Most of the sample set of patients interviewed finally learned they had Lyme through their community or hearing a story of similar symptoms after spending thousands of dollars on misdiagnosis and countless hours researching their symptoms.
Difficulty with Lyme diagnosis is not limited to the patient experience; doctors also face challenges around diagnosis because there is a shortage of consistent, comprehensive information and procedures within the Lyme diagnostic process. Both Lyme patients and doctors would benefit from improved and standardized diagnostic processes.
Recommendation Summary for this Opportunity Area
To improve the diagnostic process, there needs to be a better understanding of the various symptoms of Lyme beyond the “bull’s-eye” rash, an alignment of the conflicting medical advice, and resources to empower patients and caregivers looking for answers to symptoms.
Cohesive and updated diagnostic guidelines and procedures around Lyme, while empowering patients to also better understand their symptoms, can also equip doctors with the necessary resources to make the diagnostic process as efficient and painless as possible for patients.
Opportunity Area 3: Cohesive and Comprehensive Care Coordination
The extraordinary efforts undertaken by patients to secure coordinated, consistent, ongoing, and effective care further impedes their ability to heal from Lyme while often draining their resources. Difficulties around care coordination span the entire care journey, from the search for appropriate care to interpersonal and physical treatment of the patient by medical providers once care is engaged.
Difficulty securing care is attributed to doctors’ disbelief in patient symptoms and their reluctance to treat them, resulting in patients feeling abandoned by healthcare providers. Even after finding a physician that will treat them, patients are expected to guide their own care path without any official guidance from the government and/or the medical community at large, which can lead to financial and health consequences.
They often hop from doctor to doctor looking for someone to care for them, a phenomenon another patient referred to as “common practice.”
“When you show up with these doctors, they’re used to people seeing 20 different doctors before, I think the average is 20 doctors before they get to the right doctor.”
— Patient
The doctors who eventually treat Lyme patients bear the burden of managing their entire health plan since other doctors refuse to coordinate with them.
The patient-doctor experience itself is also fraught with concerns. For instance, patients are constantly given differing advice from doctors, not knowing whom to believe or what to do because there is no consensus on the treatment provided by the government.
“I was being told the same thing over and over, ‘I’m the one that can help you. So if you don’t come to me, you’re not going to be helped.’ And I started to realize, you know, it’s just not true. Like it’s up to me. I’m the only one at the end of the day that’s going to get myself well, you know? I had to do it on my own because nobody else was doing it.”
— Patient
Lyme patients further cite medical abuse and discrimination by providers who do not trust them.
“The doctor brought us outside and said, [the patient] is faking it …. During the first couple of hospitals she stayed at, the doctors would come in while she was sleeping, take skewers, break them. So they would show up and stab her in the feet to test if she was not faking [her coma induced by Lyme].”
— Lyme caregiver
Additionally, patients’ treatments sometimes lead to debilitating side effects and significant financial debt. Even after finally finding a doctor who tries to help improve a patient’s outcome, further communication with other doctors in the patient’s network can pose new obstacles, as some do not believe persistent Lyme exists.
Recommendation Summary for this Opportunity Area
Care coordination for Lyme patients and caregivers needs to be further aligned, with guidance around treating the persistent symptoms of Lyme. With treatment alignment, healthcare providers could treat patients more effectively and collaborate more with the patients’ network of providers. The alignment would also relieve the burden on the patient and caregiver to find answers to their or loved ones’ symptoms.
Empowering providers to treat Lyme by equipping them with guidance and support would ease current care coordination faced by patients and caregivers.
Opportunity Area 4: Holistic Life and Care Management
Patients living with persistent symptoms of Lyme experience significant emotional and physical changes. Lyme’s toll on patients requires them to adapt to new ways of existing and adopt new ways of managing their lives.
Once patients realize their Lyme illness is persistent, they tend to have a hard time coming to terms with losing their sense of identity.
“One thing I’ve forgotten is how far away I am from being normal.”
— Patient
The typical social support structure of friends, family, and community that exist when individuals experience other illnesses is not always available to support Lyme patients due to a lack of awareness and knowledge about the disease. This sense of isolation is further exacerbated when symptoms prevent patients from socializing.
As a result of a lack of understanding within the community and no access to support resources, patients often isolate themselves, feeling like they need to mask their symptoms in front of their family and friends.
“I went to bed crying every night, and I never showed that to my family.”
— Patient
Patients experience guilt and feel they are missing out on their own lives and their family’s lives. Additionally, without the medical recognition of persistent Lyme, patients have difficulty planning for the future.
“And I, if I had known I was going to be this way my whole life, we wouldn’t have kids. It would have changed our financial situation, which could have helped a lot.”
— Patient
Persistent Lyme symptoms affect not only family life but work and education plans, too. As with family planning and participation, patients adapt all aspects of their lives to their symptoms.
Recommendation Summary for this Opportunity Area
As the burden of Lyme is both isolating by nature and patients already feel abandoned by the medical community, they would benefit from an improved safety net of resources that assist with the variety of lifestyle and well-being challenges they face in dealing with persistent Lyme.
Supporting patients with their care and life adaptation around Lyme would allow them to put more energy towards managing their condition and finding treatment for their symptoms.
Utilizing the Opportunity Areas and Recommendations
The report lays out recommendations that address specific needs within each opportunity area. These recommendations can be used as a jumping-off point for generating solutions that can improve experiences for patients at each stage of the disease, from awareness of the threat of Lyme, to diagnosis, to treatments.
It is our hope and intention that the Human-Centered Design Report will be used by government stakeholders and healthcare innovators at large to leverage findings within and across areas of expertise to collaboratively and concretely develop new, improved methods of providing healthcare, a health safety net, and increased quality of life for individuals living with Lyme disease.
To that end, an innovation challenge will leverage collaboration, research findings, and technology to develop new solutions that directly address the challenges and opportunities identified by the Human-Centered Design Report. Individuals and teams are working to develop creative solutions, ranging from marketing needs, to policy adjustments, to new technology and design prototypes.
Individuals and groups working independently from the Health+ program to develop innovative solutions using the Human-Centered Design Report’s findings are invited and encouraged to share their progress and achievements with us by emailing us at HealthPlus@coforma.io or engaging with the community at LymeX.Crowdicity.com.
About Coforma
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