Long and Frustrating Autoimmune Patient Journeys (Part 1)

Slow & Uncoordinated Path to Diagnosis & Treatment

Today, autoimmune patient journeys are typically long, convoluted, and frustrating; from first awareness of symptoms to scheduling medical visits, diagnosis, treatment, and long-term care. Since many autoimmune & inflammatory diseases (AIIDs) emerge in youth or middle age and last a lifetime, the journey is inevitably long. But current barriers to care delivery lengthen the journey. It takes patients an average of 3.5 years and multiple physicians to reach a diagnosis, causing long treatment delays in which the patient’s condition worsens. Patients must manage their own care, navigating the intricate web of the modern healthcare system alone.

Some common barriers faced by patients include:

  • Paying out of pocket for lifestyle interventions (physical therapists, psychologists, dietitians).
  • Poor coordination between medical providers.
  • Referral to incorrect specialists, or gaslighting by physicians. 
  • Many more (see post part 2).

These issues create significant roadblocks for those seeking proper care and long-term remission. We believe that digital health innovations supporting virtual-first care can help transform the AIID patient journey from slow & disjointed to efficient & compassionate. This is the first of three posts discussing what’s wrong with the AIID patient journey and what we think will improve it.

Low Disease Awareness

Autoimmune diseases (AIIDs) are often invisible, with low public awareness and no screening programs. Advocacy efforts focus on individual diseases, like lupus or rheumatoid arthritis, rather than the broader category of AIIDs. The research follows a similar pattern, often with a focus on symptom management rather than broader autoimmune disease remission. 

Even more distressing, primary care physicians often lack AIID education and experience. This low awareness leads to PCPs dismissing patients’ symptoms, especially if lab tests don’t clearly show autoimmune markers, or making inappropriate referrals, for example, to mental health care (aka “gaslighting”). After such frustrating encounters, many patients turn to alternative approaches

Listen to Patients’ Voices!

Autoimmune patients often find their voices silenced by the medical system. Patients are lost amongst vague symptoms they don’t understand, gaslighting by physicians, and a difficult payment landscape. Many of the issues raised in this post could be solved by providers taking the time to listen to the voices of their patients. Patients know what they are experiencing better than anyone else. Rather than treating a list of symptoms on a page, providers need to provide adequate space for patients to express their needs. 

One way for patients to communicate their experiences and track their health is through patient journey mapping. This method follows how individuals navigate the healthcare system. The patient is placed at the center, allowing for analysis of the patient experience and how it can be improved. Health systems are increasingly adopting journey mapping to create a more patient-centric environment. A typical patient journey includes symptoms, treatments, diagnoses, timelines, obstacles, therapies, and so much more. Anything that you feel is relevant to your health journey can be expressed.

For Example: Bonnie’s Patient Journey

An example of a patient journey illustration from Bonnie’s own experiences. The colors indicate the stage of the journey (green = good, red = bad) and the loops indicate where I got stuck in a repetitive cycle.

As an example, here is an illustration of my own patient journey. It shows how autoimmune is a life-long condition, with deep roots in genetics and environmental triggers, such as infections, injuries & life events. Furthermore, it illustrates the complexity that many patients face. Rather than a simple journey from symptoms to diagnosis & treatment, it’s a path of tentative, changing diagnoses, unpredictable trigger events, and bouncing between various clinicians, specialists, tests, and procedures. For another illustrative example with more detail, see my Pictal Health journey illustration

The journey kicks off in the “yellow” when symptoms appear and the patient begins to work through her health journey. For me, this included triggers such as pain and viral infections, the manifestation of symptoms, and initial appointments with conventional medical providers. 

The patient then worsens and moves to the “red” phase of her path. This is where she or he bounces between specialists, tries different medications & therapies, and ultimately loses hope for the long-term remission of symptoms. Most of the pain points for autoimmune patients occur here. In my case, this included juggling both conventional and functional medical therapies. As a complex patient, the functional medicine “miracle cures” and positive patient testimonials did not apply. Since functional medical provider cost, supplements, and “advanced testing” are mostly cash pay, I felt like I was left with a lighter wallet and few improvements to my health. Despite 30 years of physical therapy for fibromyalgia and chronic pain, there were no movement therapy professionals to help me manage my pain. Here is what I learned the hard way about movement therapy.

At last, the patient improves and moves into the “green” phase. This typically includes finally reaching a firm diagnosis, finding a medication that works, discovering lifestyle interventions to mediate symptoms, and anything else that increases the patient’s experience and well-being. For my journey, this milestone included visiting a rheumatologist and receiving a lupus (SLE) diagnosis. I also continue the use of lifestyle interventions to improve my health in addition to medications that ameliorate my symptoms.

Let us know how your company utilizes the patient voice to implement actionable change that improves the patient experience.

Authors: DrBonnie360, Ellen M Martin, & Ellie Duvall

We approach these thought leadership posts from our multi-lens perspectives

  • DrBonnie360: Digital/virtual health consultant, Wall Street analyst, clinical dentist, patient & advocate.  
  • Ellen M Martin: Consultant, editor, life science finance/IR/marcomm, autoimmune caretaker.
  • Ellie Duvall: Digital health equity research intern, B.S. Physiological Sciences from UCLA.

Strategic Consulting & Professional Services

We provide professional consulting services to investment, emerging and established companies. Our work bridges silos and fills gaps to help our clients improve care for AIID patients and reduce costs. Informed by patient and caretaker perspectives, we urge investors & clients to integrate the best of digital, conventional and functional medicine into AIID care delivery.

  • We help our clients leverage digital innovations into V1C for AIID patients. 
  • Our subject matter expertise includes: oral health, microbiome, autoimmune patient journeys, competitive landscape analysis, strategic positioning & messaging, digital health, and self-hacking.
  • We have decades of experience in finance, marketing and communications for dozens of healthcare and life sciences organizations, emerging and established.
  • Our backgrounds include clinical dentistry, osteology, biotech IR/PR, marcomm, content creation, strategic consulting, and autoimmune advocacy.

Contact us to help you map your market landscape and understand patients unmet needs. Also, we can help you clarify and articulate your company’s market position and differentiators. Long before COVID-19, we were facilitating virtual sessions. We also create compelling content: articles, blog posts, collateral, e-books, web copy and white papers. Our Autoimmune Connect/DrBonnie360 website showcases our own content.


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