#whatif we could think differently to improve the lives of those with autoimmune disease

Bonnie Feldman drbonnie360@gmail.com

Abstract

It’s still lonely in the world of autoimmune disease. Twenty years after the promising biologicals of the 1990s, we need big data to advance further. Despite $4B in digital health funding, autoimmune diseases have been wallflowers at the party. But we aren’t just standing around: the community is generating a digital pandemonium of self-help advice, especially dietary. We face a unique window of opportunity at the nexus of scientific research, digital tools and patient experiments—focused on the human gut.

As I discussed last year, there is still a huge and growing unmet need in autoimmune disease. Sometimes called ‘invisible’ because patients may not look sick, there are some 100 different autoimmune diseases. They are in the top ten causes of death among US women younger than 65. More than 50M folks are spending $120B/year managing their diseases.There are 250,000 new diagnoses every year. Most alarming is the increasing incidence in young adults, who face decades of diminished quality of life.

When seeking medical help, sufferers still confront a diagnosis and treatment abyss. On average, it takes 3.6 years and 5 doctors to diagnosis. Why? An AARDA survey found that most family physicians feel undereducated and uncomfortable diagnosing autoimmune patients. Because they present with various vague symptoms, 51% of patients are shuttled through multiple specialists. Once diagnosed, treatment is still too often guided by trial and error. The biologicals approved for specific diseases do not work durably in many patients. For many diseases, toxic general immunosuppressives remain the standard of care. 

But there’s hope! Progress in digital data capture and analytics is enabling research in genomics, immunology, systems biology, and microbiomics: the study of the billions of microbes in and on us. Converging research points to the gut as a key organ of immunity connecting body, brain and microbes, mediating immune responses to food, infections and antibiotics. This is both a research focus to explore common features of autoimmune diseases and an opportunity for patients to treat themselves now with gut-level interventions like diet and stress management. 

How can digital tools help us understand how the gut connection influences immune function and dysfunction? How can we maximize this opportunity to reduce chronic suffering now and prevent disease in the future? By working together to translate scientific advances into clinical practice and by listening to patients as sources of new ideas and real-world experiments, we can speed diagnostic and treatment development. 

  • First, from the patient viewpoint, we will review new research from company and patient interviews that highlights the gaps from R&D through clinical trials, diagnosis, treatment and care coordination. 
  • Second, using new information from hundreds of company interviews, we will begin to sort the hype from the hope. Referencing progress in applying data and digital tools in cancer, rare diseases, aging, health and wellness, we will highlight emerging approaches to addressing autoimmune diseases. 
  • Third, we will offer tangible next steps for patients to help themselves now while helping others in the future.

Because many of the e patients at Stanford Medicine X have autoimmune diseases, I would like this session to be both interactive and participatory, focusing on building bridges over the Autoimmune Abyss.

As I began thinking about solutions last year at Medicine X, I thought that we could find templates in the rare disease and cancer communities.  Now I realize that we need to cast a wider net to look for solution templates. 

This workshop is dedicated to bringing all types of patients (cancer, rare disease, autoimmune, aging, health and wellness and others) together to share from their experience and learn from one another, so that we can create tangible solutions for autoimmune patients.  

I can set the stage by sharing my extensive new research that identifies gap across the healthcare continuum from research, clinical trials, to clinical care and patient experience. Several large problems will be discussed, with some examples given and then an open dialogue from the workshop participants. 

Problem 1:  Diagnosis and treatment planning are uncoordinated, takes too long and is frustrating and expensive for the patient. 

Possible solution: Digital tools for care coordination, similar to a cancer tumor board for treatment planning, more communication with integrative approaches and multiple feedback loops to create a learning system.  Patient communities for all autoimmune diseases. 

Case Studies to stimulate new ideas applied to autoimmune: C3N Collaborative Network, Twine, Flatiron in Cancer, and others. 

Open discussion from the participants to create tangible next steps. 

Problem 2:  The role of diet, as well as the view of the gut as an immune organ is in its infancy.  The Institute of Functional Medicine offers some structure, but it is difficult to get coordination between mainstream Western Medicine and complimentary approaches.  Yet, autoimmune patients need to experiment now. 

Possible solution- Look to the health and wellness community or the aging community to find digital tools that help with behavior change, diet modification, exercise. 

Case studies- Samueli Institute, Canary Kids http://www.epidemicanswers.org/solutions/canary-kids/ 

Open discussion about the type of platforms that have worked in certain diseases and how they might be applied. 

Problem 3: Research and clinical trials are not looking at the underlying cause of autoimmune disease.

Problem:  There are too many silos.  Even non-profit patient advocacy groups are still grouped by diseases, based upon body part. (Rheumatoid Arthritis, Crohn's, MS) 

Possible solution:  Patients need to donate data and insist on data and knowledge sharing platforms in both the for profit and the non-profit world.

Case studies: Open Medicine Institute, T1D Exchange, Syapse in Cancer, Transparency Life Science

Open discussion about how patients can come together and speed up getting the solutions they need.

Other problems may be discussed depending upon the experience of the workshop participants.

(Please note that this is linked to the Oral Presentation entitled "A New Hope: Microbiomics and the Digital Gut Toss Lifelines Across the Autoimmune Abyss") 

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