We are here republishing our 2014-17 Stanford MedX autoimmune presentations, plus unpublished material from our 2015 Autoimmune Workshop. As we develop our 2023 State of Autoimmunity Report, we’ve been revisiting our previous analyses. For another example, see our 2016-19 patient-centered vision and business opportunities post. In 2015, Bonnie conducted an autoimmune patient survey (solicited via Facebook and Twitter; n=400), and presented those results at Stanford MedX 2015, where we also facilitated a workshop. We attracted 25 patients, providers and others to discuss pain points and brainstorm solutions. We heard many patient (and provider) journey stories. Participants offered ideas for fixing the broken system that impedes care for autoimmune. When we reviewed the output, we were struck by how relevant this work still is, despite significant progress in digital health in the past 7 years. So we publish more of this output here for the first time, consolidating it with our previously published work.
Some progress since 2015
Since 2015, digital health innovation has advanced. Organizations like the Digital Medicine Society (DiME) aid and promote digital health companies. Investors such as Takeda Digital Ventures, Redesign Health, Flare Capital Partners and others have been funding emerging companies delivering chronic care through virtual-first models. A few are even beginning to address the needs of autoimmune patients. However, until these ventures scale and influence wider clinical practice, the problems voiced by autoimmune patients in our 2015 Stanford MedX survey and workshop will persist. For more of our earlier voices of autoimmune patients see also our Invisible Suffering post on Medium.
Stanford MedX 2015 autoimmune survey predicted Long-COVID patient experience
“Why is the research question framed [so] a low accuracy laboratory test is to be believed … more than patients’ testimonies about their own health? The burden of proof should not be on ill people every time that a study implies that Long COVID is imagined.”
Nature Reviews Immunology: Lessons from Long COVID: working with patients to design better research
In a distressing parallel, the Stanford MedX 2015 autoimmune patient complaints are much the same as complaints from Long-COVID (and fibromyalgia, ME/CFS/SEID) patients today. These continuing issues around access and misdiagnosis points to the need to focus research on long-neglected post-viral (and post-bacterial) infection syndromes. It also points to accumulating evidence that autoimmune processes underlie at least some Long-COVID, ME/CFS/SEID and fibromyalgia cases. Furthermore, it points to an ongoing care delivery barrier. This BMJ commentary calls it “‘structural iatrogenesis,’ where patients are harmed by power imbalances in the bureaucratic and cultural systems within medicine.” And this Nature Reviews Immunology comment admonishes researchers to learn from Long COVID to stop framing poorly-understood diseases as mental illness, as too many autoimmune patients have reported. This issue was also mentioned in the NIH May 2022 Autoimmune Report, which recommends launching a National Autoimmune Institute to coordinate research and (for the first time ever!) collect national US data on all autoimmune diseases.
“Framing illnesses that we still lack sufficient knowledge about as ‘beliefs’ can be harmful…We have seen this happen with…ME/CFS, and …the medical research community [must] learn from these mistakes. Particularly for chronic conditions that are still poorly understood…”
Nature Reviews Immunology: Lessons from Long COVID: working with patients to design better research
Our Stanford MedX 2015 autoimmune survey & workshop participants identified key pain points for patients. We grouped these into 3 problem groups: Diagnosis Purgatory, Tower of Babel, No Root Causes. We presented selected survey results to workshop participants, who brainstormed around the three problem areas the survey identified. For a more detailed summary, see this Tincture post or the embedded .pdfs below.
1. Diagnosis Purgatory: Inefficient, lengthy, inaccurate
Problem: Diagnosis takes multiple years & physicians, missed & misdiagnosis is too common
- Patients are frequently disbelieved (“gaslighted”), their symptoms dismissed, denied, or defined away as psychosomatic or mental illness. Autoimmune as a possible diagnosis rarely occurs to PCPs.
- Even if they suspect autoimmune, primary care clinicians often insist on watchful waiting, in ignorance that this delays treatment while disease progresses. Waiting is incentivized by payers.
- If and when primary care gatekeepers believe patients, they refer them out to specialists (often out-of-plan), which usually involves lengthy (sometimes months) waits for in-person visits. Specialists hand off patients multiple times for examinations & tests, often repeating the same tests, rather than building on the experience of the patient, PCP, and the other specialists.
- Lab and imaging tests are not very accurate, sensitive or reliable (high false negatives, few biomarkers) in autoimmune diseases, but physicians make diagnostic decisions based on lab or imaging results (especially if they are negative) or their own observations, over patient-reported symptoms, further delaying diagnosis and treatment.
- All these physicians rarely communicate with each other, and often disagree with each other as well as the patient as to diagnosis. Patients (who are increasingly worried & disabled) must coordinate all their own care and carry their data/information from visit to visit.
- EHRs, ICD10 ontologies and checkboxes constrain thinking into predetermined diagnostic boxes.
Solution ideas:
- Bridge silos, improve communication between multiple specialists and PCPs. Use telemedicine to enable team conferences and spare disabled patients the hardships of travel to in-person care.
- Create multidisciplinary teams: Coordinator (not necessarily PCP), primary care, specialists. Meet with patients via telepresence to see the whole patient, compare notes and plan diagnostic processes.
- Treat patients as people, not cases or lab results. Encourage a more open-minded approach that allows physicians to admit they don’t know or are wrong in order to course-correct sooner. Acknowledge all symptoms, acknowledge multiple diagnoses. Consider borderline cases.
- Treat patients as partners with special personal knowledge. Educate patients and public to be more aware of autoimmune and include any family history of autoimmune in their medical histories. Encourage patients to collect their own data.
- Improve medical education to reduce gaslighting and psych-first approach (“just because the patient is crazy doesn’t mean she isn’t sick.”). Make PCPs more aware of autoimmune diseases in the differential. Remove arbitrary barriers such as age (“you’re too young to have that”), sex (women more likely to be disbelieved), narrow focus on lab numbers, etc.
2. Tower of Babel: Uncoordinated care
Problem: No coordination of complex chronic care across multiple providers
- Lengthy (weeks or months) waits for specialist appointments. In some regions, certain specialists (e.g., rural rheumatologists) are not accessible at all.
- Silos mean poor or no communication among clinicians and with patients. Medical decisions, prescriptions are scattered and contradictory. Specialists disagree with each other and the patient, order redundant tests and conflicting pharmaceuticals (polypharmacy).
- No care delivery team: no leader, no cooperation, narrow focus on own specialties & lab numbers, not the whole patient.
- Complementary and conventional medicine are separate, even hostile, systems (payments, practices, communication).
- Most care plans amount to: prescribe a drug and see the patient in 3-12 months.
- Choice of medications is usually by trial and error (from cheapest to whatever works, biomarkers of limited help).
- Payer barriers, e.g., prior authorizations and formulary restrictions, further hamper matching drugs to patients.
- Little use of non-pharmaceutical interventions (NPIs), lifestyle or complementary (diet, exercise, sleep, stress, supplements) modalities. Functional medicine approaches are ignored or not integrated.
- Patients are on their own between visits, especially if they have both functional and conventional physicians.
- Technology is a barrier, not an enabler, without EHR interoperability, integration and shared data.
- Despite the ubiquity of apps, laptops, & mobile devices, patient-generated data lie outside the system, not captured in EHRs (HIPAA barriers).
- Data for autoimmune diseases is mostly missing, there having been no national data collection ever. Other stakeholders do not collect data for autoimmune as a category.
Solution ideas:
- Improve coordination
- Establish and empower a care coordinator (coach, guide, sherpa, etc.). Leverage practice extenders: PAs, NPs, RNs, etc.; these could be patients or caretakers if able and willing. This is the same suggestion as to the diagnosis problem, because both diagnosis and treatment suffer from bad or no care coordination.
- Conduct collaborative telepresence sessions across the team, including PCP, specialists, patient & caretaker to share information, feedback and brainstorm care plans.
- Technology
- Increase patient control of and access to EHRs, let them help correct errors.
- Improve patient portals (GUX is usually user-unfriendly), including sending labs & other test results to patients asap without them having to ask.
- Apply analytics and decision-support software to diagnosis & treatment.
- Practices should provide mobile apps or welcome patients’ own use of apps.
- Complementary modalities
- Better medical education about complementary medicine: diet, exercise & movement therapy, sleep, pain control, supplements.
- Educate patients to be more skeptical about woo: adrenal exhaustion, supplements, etc.
3. Root Causes: not pursued nor understood
Problem: systemic autoimmune disease obscured by body-part silos
- Current medical education reflects historic origins of scientific medicine in infectious disease, with simple cause (pathogen), effect (fever, rash, etc.) and treatment (antibiotics). This paradigm poorly equips docs for complex chronic disease management.
- Diagnosis and treatment are narrowly body part and symptom focused. Early intervention is unusual, prevention not even on the horizon. Standards of care and guidelines are mostly one-size-fits-all for common diseases.
- No root-cause analysis, biological systems thinking or holistic patient view.
- ICD10 & EHR ontologies obscure underlying commonalities.
- Personalized, precision medicine is still a pipe dream.
- Hard to characterize, code and pay for diseases that cross multiple specialties or categories. Regulations and payments not structured for complex, chronic (especially rare) conditions.
- NPIs (diet, exercise, sleep, stress, supplements) are rarely in conventional care plans. Functional care ranges from useful bleeding-edge ideas to snake oil and it’s hard for patients to discriminate.
- Basic research is narrowly focused on individual diagnoses. Research rarely investigates similarities across autoimmune diseases (like oncology does with cancer) or disease clusters (polyautoimmunity, comorbidities). Little research on triggers, especially infections, but also foods.
- Pharma development and regulation, like clinical care, is still dominated by a single disease–single drug approach (‘90s “magic bullet” paradigm). -Omics and other advanced research is little reflected in drug development and rarely in clinical practice.
- Entrepreneurs, investors, and emerging companies shy away from autoimmune because of these issues.
Solution: Think of autoimmune disease as a systemic disorder, not just end-state tissue damage
- Challenge the predominant scientific-medical paradigm to move from single cause-effect and statistical thinking (if it’s rare it never appears on the differential) towards a more holistic, systems approach.
- Look for root causes (genetics, environmental triggers) not just immediate causes of isolated symptoms to disparate body parts. In autoimmune, all those separate symptoms, even multiple diagnoses, may have a common cause.
- Look beyond B & T-cells & cytokines to evo-devo of immune system interactions.
- Consider family history, genomics, previous infections, food sensitivities, antibiotic/polydrug/toxin exposure and the microbiome.
- Improve Phase IV data collection in autoimmune drugs–a wealth of information (currently underutilized) that can help better match, monitor & develop better drugs.
Conclusion: More progress since our 2015 Stanford MedX autoimmune workshop driven by COVID
It’s true, if depressing, that it took the COVID-19 pandemic and lockdowns to change medical care delivery towards our vision.
- Telemedicine, which was a pipe dream for us in 2015, is now a standard offering in most practices.
- Long COVID has at long last prompted (and funded) research into post-viral syndromes. This is revealing new connections with autoimmune that may shed light on underlying systemic causes.
- There has been great technical progress in creating remote monitoring devices and tracking apps for autoimmune diseases. However, these are still underutilized in clinical practice.
- The concept of patient-centered care, our vision in 2016-19, is now widespread in the digital health investment and entrepreneur community, as is virtual-first care (V1C) delivery.
Digital health investors and entrepreneurs tackle autoimmune
Although individual autoimmune diseases are still treated by siloed specialists and patient-centered models are not yet standard of care, there has been progress. Most encouraging, investors like Takeda Digital Ventures, Redesign Health, Flare Capital Partners and others are funding new V1C delivery companies.
- Decode Health offers population analytics to employers and payers to help find autoimmune patients earlier and get them into care faster.
- We still need more useful autoimmune biomarkers. Now, companies such as Exagen, Progentec and Scipher are working to find and improve biomarkers for diagnosis, matching patients to drugs and monitoring their progress.
- It still takes too many autoimmune patients too long to get specialist appointments. Companies like Remission and Motto use telemedicine to provide fast access (within days) to rheumatologists.
- CrossBridge has built a technology platform to streamline rheumatology autoimmune care, including evidence-based clinical decision support.
- Emerging care delivery companies like Oshi and SonarMD focus on GI diseases, including autoimmune diseases like IBD.
- Companies like Aila and Mymee offer virtual care delivery across multiple autoimmune diseases. AndHealth is focused on migraine, with autoimmune in their future plans.
- Ciba Health, Gritwell and others are virtual-first care delivery companies that include functional medicine in their mix.
Finally, funded before the pandemic, but even more relevant since, the May 2022 NIH report recommends collecting national autoimmune data for the first time ever and aggregating it, as cancer data has been for decades. It also proposes coordinating the 13 NIH research organizations under an umbrella National Autoimmune Institute, modeled after the National Cancer Institute (founded in 1937).
Stay tuned for more details in our 2023 State of Autoimmunity Report!
Authors: DrBonnie360, Ellen M Martin & Emily Burns
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, writer & editor, life science finance/investor relations/marketing communications, autoimmune caretaker.
- Emily Burns: Digital health equity research intern, Public health associate with the Centers for Disease Control and Prevention.
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 healthcare and reduce costs for patients with autoimmune and chronic inflammatory disorders. Informed by patient and caretaker perspectives, we integrate the best of digital, conventional and functional approaches.
- 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 for help understanding the market landscape and patient unmet needs, as well as clarifying and articulating your company’s market position and strategy. Long before COVID-19, we were facilitating virtual sessions. We create compelling content: articles, blog posts, collateral, e-books, web copy and white papers. Our Autoimmune Connect/DrBonnie360 website showcases our own content.
