Autoimmune Patient Journey
The convoluted journey of patients with autoimmune and inflammatory diseases (AIIDs) has many stages. Unlike cancer, diabetes, and heart disease, there are no population screening nor public health education programs for AIIDs. This blocks the path to early diagnosis and preventative autoimmune care.
As early symptoms fluctuate & worsen, people eventually seek help from their primary medical providers. However, scheduling an initial conventional care visit can be long delayed, especially if symptoms are vague or unalarming. Providers too often refer patients, especially women, minorities, and people with anxious or depressed affect, to mental health care, leaving patients feeling gaslit.
Depending on presenting symptoms and test results, the journey continues with specialist referrals. Patients often are referred to incorrect specialists, further delaying proper diagnosis and treatment. Once they get to an appropriate specialist, providers attempt to interpret often vague labs and may wait for clearer indicators to emerge. Eventually, perhaps after years of bouncing from primary to various specialists, the patient receives a specific diagnosis.
Based on the diagnosis, specialists create initial treatment plans from a wide variety of options. Conventional practices often restrict treatments to only medications, which are often costly and only effective in about 30% of patients. If the cost of a drug co-pay is too high, some patients may never fill their prescriptions at all. Patients are left to discover and manage potentially helpful lifestyle interventions (diet, exercise, sleep) on their own.
Our Vision of Autoimmune Care
At Autoimmune Connect, we have long advocated for a reimagined approach to autoimmune care. We envision lifelong personalized care from prevention (genomics, microbiome, population analytics) through diagnosis, treatment, management & remission.
At the heart of our approach is a commitment to patient-centric care, where individuals are truly heard, advocated for, and met at every point in their health journey. This is facilitated by the embrace of virtual-first care (V1C) and digital health technologies, enhancing healthcare accessibility and assembling a cohesive, multidisciplinary care team under the guidance of a digital clinic and health coach. With this setup, patients are relieved of the burden of navigating a fragmented healthcare system.
Coordinating a provider team through technology empowers autoimmune patients to access a wider spectrum of specialized care to enhance their overall well-being. Specialists can seamlessly refer patients for necessary tests, labs, and diagnostics, reducing the redundancy of medical histories and treatments. This approach also gives patients back control of their lives, allowing them to prioritize what matters most to them rather than constantly tending to their health needs.
Our vision encompasses an evolved care model that transcends conventional practice by including lifestyle interventions such as nutrition, exercise, sleep, and mental health support. Achieving this requires a coordinated network of nutritionists, physical therapists, mental health experts, and others, all dedicated to assisting each patient holistically and individually.
Improving educational resources on lifestyle interventions for chronic diseases is crucial, and the healthcare system should integrate these specialists, ensuring that insurance covers their services rather than burdening patients financially.
This vision of patient-centered, digitally connected interdisciplinary care has attracted investment in virtual-first delivery models. Since the pandemic, we think V1C digital care delivery is not only here to stay but poised to grow. That growth is most visible in chronic disease care, e.g., diabetes and hypertension. However, investment is at last picking up steam for chronic autoimmune & inflammatory disease care.
Digitally-Enabled Patient Journey
Digitally enabled, virtual first care (V1C) offers a potential solution to convoluted autoimmune patient journeys. Virtual specialist practices get patients to see a rheumatologist or gastroenterologist much faster (days rather than months) and with less friction from travel, child & work hassles. Many digital health providers prioritize improved care coordination and place a greater emphasis on lifestyle interventions, without eschewing medications.
Other V1C practices integrate lifestyle changes into their initial care plans. Staffing (or networking with) nutritionists, dietitians, physical and occupational therapists, mental health professionals, and other specialists (dermatologists, neurologists, gastroenterologists) enables comprehensive patient-centric support to achieve faster remission. This lifts some of the burden of managing disease from patients’ shoulders.
In an ideal scenario, people would know their autoimmune risk, family history and genomics, long before experiencing any symptoms. They and their primary care providers (PCPs) would be alert to triggers, such as post-infection syndromes, like long COVID and EBV-triggered lupus. This would mean that, as soon as symptoms emerge, patients & physicians can start the diagnostic process, before symptoms worsen as the disease progresses. Alternatively, PCPs or healthcare plans could refer patients to digital health platforms as autoimmune concerns arise. Ideally, using analytics, plans would routinely screen people for risk, alert them and their PCPs to the possibility of autoimmune disease, and schedule prompt virtual specialist visits.
To guide medication selection, specialists could use multiple tools: blood test results, imaging, biomarkers, digital biomarkers, and patient genomics. Additionally, lifestyle interventions should be the standard of care as part of this holistic approach. Health coaches or mobile patient apps could facilitate day-to-day monitoring of symptoms, diet, activity, exercise, sleep, mood, pain, and overall quality of life.
The virtual care team would include dietitians, physical and occupational therapists, exercise coaches, mental health professionals, sleep specialists, and others. Additional specialists could join the team as needed, such as dermatologists and rheumatologists co-managing psoriatic arthritis, to address all aspects of the disease and the patient. With such a comprehensive approach, more patients can achieve remission (and that should be a major goal of clinicians), supporting the tapering or discontinuation of some drugs.
Long-term monitoring to anticipate flares and promptly prevent or treat them would be built into these programs. By maintaining ongoing care and support, autoimmune patients can effectively manage their condition and lead healthier lives.
Read our other 2023 State of Autoimmunity posts below!
- The Chronic Disease Epidemic: Visible & Invisible
- Siloed Treatments & Specialties for Autoimmune Diseases
- Autoimmune Incidence & Prevalence
Authors: DrBonnie360, Ellen M Martin, & Ellie Duvall
We approach these thought leadership posts from our multi-lens perspectives.
- DrBonnie360: Digital health consultant, clinical dentist, Wall Street analyst, patient & advocate.
- Ellen M Martin: Consultant, editor, life science finance/IR/marcomm, AIID caretaker.
- Ellie Duvall: Digital health equity research intern, recent B.S. in 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 lifestyle medicine into AIID care delivery.
- We help our clients leverage digital innovations and virtual-first care (V1C) for AIID patients.
- Our subject matter expertise includes: Oral health, microbiome, patient engagement, competitive analysis, strategic positioning & messaging, digital health, and self-hacking.
- We have decades of experience in finance, marketing, and communications for 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. We can help you clarify and articulate your company’s market position and differentiators. Long before COVID-19, we were facilitating virtual sessions. We create compelling content: articles, blog posts, collateral, e-books, web copy, white papers. Our Autoimmune Connect/DrBonnie360 website showcases our own content.