DrBonnie360 returns to Stanford Medicine X 2016 on the Main Stage. As a champion for all autoimmune patients, DrBonnie's new goal is collaborate and work together to save our children from the growing epidemic of autoimmunity. Approximately 27% of children under 19 - and rising - have at least 1 chronic condition, and by 2023 $4.2 Trillion lost economic output will be spent on chronic disease. Will you join to help save the future?
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Welcome, I am Drbonnie360; and I am delighted to be back at Stanford MedicineX to discuss the next chapter in the Invisible Epidemic of Autoimmune Disease and ask for your help.
My audacious vision is to reimagine research, diagnosis and treatment of all autoimmune diseases. This began in 2014 at StanfordMedx. Our mission is to empower autoimmune patients with the tools, coaching and community support to self-manage their health.
However, “Saving Our Children,” is not something a small team can do alone. I’m seeking two types of collaborations.
First, interested individuals who can help us find and create new sources of data and digital tools to treat, reverse and prevent autoimmunity. Second, companies working on products and services, perhaps in an allied space, such as cancer, fibromyalgia, chronic fatigue, chronic pain or others, where their products and services could be tweaked to help autoimmune patients.
These goals happen to be both personal and professional as my family and extended family struggles with autoimmune disease. Unfortunately, some of my grandkids have a double dose of these genes.
Perhaps what’s even more heartbreaking than the reality my own grandkids could face, is the exponentially increasing amount of young adults and children with chronic disease, specifically autoimmune.
In other words, should the health system remain the same, we are facing approximately 50+ years of unnecessary suffering for the young population.
So what do we do?
We recognize and address the untapped growing market.
What many people don’t realize or actively address is that the need and opportunity in chronic disease, especially autoimmunity, is huge.
Autoimmune disease is underserved and under-recognized.
First: There are more than 100 kinds of autoimmune diseases In the US, they affect 16% of the population, which is more than cancer and heart disease combined! In the aggregate, they’re a top ten leading cause of death in women younger than 64 years old. Moreover, approximately 27% of children have a least one chronic condition that could become an autoimmune disease. In fact, the incidence of IBD has doubled in children under 10!
Not only is the market large and ready for improved care, but the economic burden of chronic disease (costs plus lost productivity) in America is spiraling out of control.
Already, 80% of healthcare dollars is spent in treatment of chronic disease. That’s approximately 1 trillion dollars. By 2023, its predicted spending and lost economic output could quadruple! (4.2T)
But where’s autoimmunity? This is just chronic disease
In a recent Medium post entitled, “The Invisible Epidemic of Autoimmune Disease,” we searched for autoimmune stats only to discover that autoimmune diseases were counted individually and grouped by body part with other chronic conditions.
Instead of aggregating all autoimmune diseases as a complete entity – like cancer – autoimmunity is hidden in chronic disease data – the individual diseases are isolated from each other, obscuring the huge size of the need.
This means that the 50 million+ Americans with an autoimmune disease (remember – that’s more than cancer + heart disease patients combined) are left with the crumbs of NIH funding - 7x less than cancer, and that includes type 1 diabetes!
With odds seemingly against us, how do we meet the needs of the market, reduce costs, and save our children?
By utilizing and collaborating with what we have now!
Today’s digitally connected world has provided us with all the parts to create personalized medicine. We just need to collaborate so we can figure out how to put the pieces of the puzzle together.
The ever-improving technological infrastructure has created things like the API-Cloud economy and ubiquitous smart devices, as well as the huge data sets that allowed development of Big Data and Big Science.
Big Data, along with small data that becomes big data, gives us the ability to create algorithms that are both personalized and prescriptive. while Big Science uses large data sets which have sped up our scientific efforts, such as the recent progress in understanding our microbiome. For instance, we now know that the gut is an organ of immunity, which suggests implications for autoimmunity.
Yet, despite the incredible potential these advances offered, autoimmune patients still face, on average, 3.5 years and 5 doctors to get an autoimmune diagnosis. What’s worse is that during this process about 45% of patients at some point were dismissed by their physicians as hypochondriacs or merely depressed. With that in mind, we decided to ask autoimmune patients what they’ve experienced and what they need at last years Medicine X.
Launching a pre-workshop online survey, marketed through social media, we were surprised by the several hundred responses we received.
We unexpectedly found that members of the autoimmune community were more than happy to voluntarily fill out a survey of open-ended questions. Not only were they willing, but the majority of responses were emotionally charged, detailed descriptions of their daily struggles.
Many described similar frustrations with accessing care: “still trying to find answers” “Struggling to regain vitality after 15 years of misdiagnosis and another 5 years of not quite getting all the pieces of the puzzle in place” “Decades of symptoms being dismissed by multiple doctors, until ultimately losing my career and quality of life. Only when I had no choice than to educate myself was I taken seriously.”
But they also similarly described that their ideal care looks like: “Doctors working together” “Combination of traditional, holistic and naturopath” “The biggest help would be doctors updating their knowledge and familiarizing themselves with autoimmune patients”
From the survey, we prepared a workshop – held here at MedX – where three common themes were addressed and ideal solutions were brainstormed.
Problem 1: Diagnosis purgatory- Autoimmune disease can take an average of 3.5 years and 5 doctors to get a diagnosis - symptoms are frequently misdiagnosed or referred away.
Problem 2: Care coordination-a Tower of Babel- care is fragmented and uncoordinated across multiple specialists with poor communication with patients and each other. Most are narrowly focused on labs and single diagnosis and treatment. EMR/portals and digital health are not performing as promised.
Problem 3: Finally, Root causes are not pursued or understood. Diagnosis and treatment are symptom-based, R & D focuses on narrowly defined body-part diagnosis and targets and develops single Rx treatment for each disease.
Favorite ideal solutions to these struggles were: Create joint multidisciplinary teams with a variety of MDs, coordinators and complementary practitioners to meet with patients at one time in order to shorten the time to diagnosis We could use telepresence and other tools to meet patients where they are and include all practitioners. Empower a care “quarterback” to coordinate what is now fragmented and repetitive care and lastly Challenge the scientific medical paradigm to move from reductionist, single-organ thinking to systems biology in order to discover root causes of autoimmune pathology.
With the end goal from patients in mind, where do we find the glimmers of hope today?
Interestingly, the survey and workshop results validated our past suggestions for change.
In 2014, we identified the need to integrate lifestyle modification, shown here as the foodasmedicine team, the musculoskeletal integrity team and the well-being team, into conventional medicine and acknowledge its influence on autoimmunity.
In 2015, we envisioned how we might create a larger toolkit for autoimmune patients by taking the best of Western and Alternative medicine on all levels of care – research, development, and care. Notice that the patient is in the center and has a collaborative relationship with the healer.
Since 2014, we began seeing hopeful developments in companies and organizations working along these lines.
There are separate companies being created for digitally connected lifestyle modification - like our 2014 vision - working either in the realm of the well-being, or musculoskeletal, or food as medicine team.
Moving forward to today, we are finding more and more working on separate parts of the 2015 vision.
However, the connecting lines between each section of the visions have not been drawn.
There are still gaps – opportunities – for personalized solutions for autoimmune medicine.
[This slide shows us the white space of opportunity for personalized autoimmune medicine. The categories are arbitrary chosen for visual display purposes]. Emerging companies focus on difference pieces of the puzzle, ranging from lifestyle to sharing; not quite filling out all the gaps in between Digital therapeutics comprises companies digitizing self-help products & services using evidence-based programs. examples include: sleepio, applying cognitive behavior therapy for sleep. Kurbo, that has created an evidence-based program to combat pediatric obesity. Omada Health for pre-diabetes prevention. Note we are still missing programs that address body structure and how that affects function. (walking/posture programs or those that look at connective tissue issues) A subset is coaching platforms, using both high-touch and high-tech approaches ranging from MyMee offers personal coaching, one of the few focused on autoimmune disease managementVida has built a general coaching platform that combines people & techLark’s platform is totally automated with patients interacting via mobile device. Digital conversations reflect the rise in Patient communities such as Autoimmune Citizen Science, Chronology, Smart Patients, myHealthteams, Wego Health, that provide information, education, and support. (Helping patients learn through similar patients’ experiences) Digital checkups include a group of start-up companies working to improve collaboration and coordination for patients with their care teams between office visits to close the feedback loop. These include Welkin and Conversa.
Perhaps most exciting are new companies beginning to bridge the gaps between digital medicine, digital conversations and digital check-ups in new and different ways. Arivale, shown here spanning the broad categories of lifestyle and sharing, is blending advanced data to achieve wellness. They named this new space, Scientific Wellness. (they look at genome, genetics, blood, hormones, microbiome, lifestyle)
Above Arivale, is a spectrum of companies redefining the care system from the bottom-up to personalize, digitize, and integrate care: Parsley Health, Twine, Dear Health, and the Open Medicine Institute.
So, although the number of companies working in the chronic disease and autoimmunity space is slowly increasing and giving us renewed hope, there are still many gaps that have yet to be addressed. However, filling those gaps is no longer impossible.
We must work together to find and combine new sources of data and digital tools, as well as products and services to treat, reverse and prevent autoimmunity.
That is why we created a facebook page called Your Autoimmunity Connection to bring the best new ideas from functional and conventional medicine to autoimmune patients.
In addition to the facebook page, we are writing “A Patient’s Guide to Sorting the Hype from the Hope in Autoimmune Disease” to address the huge amount of pseudoscience around autoimmunity.
People often wonder why I am advocating for such a major change. After 7 different careers, spanning clinical dentistry to Wall Street, like many of you, I am a patient in a broken system.
More importantly, I am the proud mom of 4 grown adults and a grandma. When we see a problem we have to fix it. After all, isn’t that what moms and grandmoms do every day?
But only when we embrace a collaborative mindset can we have the power to change the trajectory to save our children.
Let me know where I can help you in bringing new products to help autoimmune patients. You can reach me at drbonnie360 on twitter.
Saving Our Children: How to Reverse the Autoimmune Disease Epidemic
How to Reverse the Autoimmune Disease Epidemic
S a v i n g O u r C h i l d r e n
Bonnie Feldman, DDS, MBA – Your Autoimmunity Connection | www.DrBonnie360.com | @DrBonnie360
100+ autoimmune diseasesTop 10
cause of death in women
16% US Population
has an Autoimmune Disease
More than Cancer + Heart Disease
Incidence of IBD in Children under 10 years old DOUBLED
27% of children under 19 years old
have at least one chronic condition
230 Million Americans
with Chronic Diseases
An Untapped Growing Market
of US healthcare dollars ($1T) is spent in treatment
of chronic disease
A l r e a d y ,
B y 2 0 2 3 ,
in treatment plus economic output will be
spent on the ~230 Million Americans with
M e d i c i n e
G e n o m i c s
A n a l y t i c s
A l g o r i t h m s
S e l f - H e l p
B I G D A T A B I G S C I E N C E
T E C H N O L O G Y
F i n a n c e
P r o t e o m i c s
S y s t e m s
B i o l o g y
A P I e c o n o m y Ubiquitous Mobile
Amplifying Their Voices
“7 YEARS and more than 13 DOCTORS”
2 0 1 5 M e d X A u t o i m m u n e S u r v e y
“Once a patient is labeled … it’s hard to
unwind and change course”
“They diagnosed depression, chronic sinusitis, back
problems, possible tumors, lazy, etc.”
Amplifying Their Voices
2 0 1 5 M e d X A u t o i m m u n e W o r k s h o p
not Pursued or UnderstoodJoint Multidisciplinary
Empower a Care Quarterback for the Team
Move Towards a Systems Approach
DIGITAL THERAPEUTICS DIGITAL CHECK-UPSDIGITAL CONVERSATION
Integrated Autoimmune Medicine
TRA CKI NG SE LF-CA RE FE E DB A CK COMMUNITY COO RDINATION CO LLABO RATIO N
• An Invisible Epidemic – an economic and statistical look at
why autoimmunity remains underserved
• Battling an Invisible Epidemic – the journey to amplifying
the Lonely Voices
• How Do You See Chronic Invisible Suffering – building the
model to improve the lives of a disease population greater
than cancer and heart disease combined
• Why is Autoimmune Disease Underserved?
• #WhatIf We Could Think Differently for Autoimmunity –
Highlights from the Stanford Medicine X 2015 Workshop
• In-depth summary of problem and solutions
Bonnie Feldman, DDS, MBA
DrBonnie360 is helping companies and entrepreneurs
counteract the autoimmune epidemic.
Through consulting, market research, writing and
speaking, she works with teams using data and digital
tools to reshape research, diagnosis, treatment and
prevention of autoimmune disease.
Content and Visual Design – Tiffany Simms