The State of Autoimmunity 2016 — A Progress Report: Part 1 (re-posted from Tincture)

Bridge representing the gap in autoimmune care

What was the state of autoimmunity in 2016, that unforgettable year full of positive and negative events? One positive development was increasing awareness of the unmet needs of people with autoimmune disease. Bonnie spoke at/attended conferences, including Stanford MedX, Targeting the Microbiome, Health 2.0, and the Personalized Lifestyle Medicine Thought Leaders Conference. She was surprised and encouraged to see increased interest in autoimmune disease (AID). Nevertheless, despite decades of research and development, diagnosis, treatment and management of AID remains a woefully under-appreciated market opportunity. Therefore, this post focuses on four trends: Patient communities and patient-focused conferences, digital health, food as therapy, and growth in functional medicine.

Autoimmune Disease is an Untapped Market Opportunity

Since Bonnie first began her journey in 2014, autoimmunity has come a long way. Awareness of AID has increased, research has improved understanding of causes, patient communities and activism have grown. Most important, large technology and healthcare companies have started to address chronic disease management. So, what is our view of the state of autoimmunity in 2016?

Despite significant progress in the past two years, AID (an acronym that, as of 2020, has not caught on!) remains under-recognized and under-researched. (Read more about the untapped market opportunity in An Invisible Epidemic). Today, there are still only a few companies and organizations working directly to improve health care for all autoimmune patients. Opportunities abound to reimagine research, diagnosis, and treatment of autoimmune diseases. In particular, we see empowering patients with tools, coaching and community support could better manage their health.

As shown below, there is still an enormous need for collaboration to bridge the gaps in care many patients experience. This year has shown me how many patients are trying to coordinate two very different medical systems — conventional and functional — when seeking care. However, these systems are disconnected from each other, often hostile, and speak different clinical languages! Conventional specialists and primary care practices face similar issues of disconnect and coordination.

How can we start to combine the best of both systems to help autoimmune patients achieve their healthiest potential? Based on converging trends in digital technology, enabled grassroots activism, and scientific understanding, we predict encouraging changes converging aspects of conventional and functional medicine.

1. The growth of patient communities

This trend started around the turn of the century. With the rise of the internet, ubiquitous connectivity, and social media, came a growing number of online patient communities. There also came growing interest in citizen science, self-hacking, and global expansion of the quantified-self movement. The growth and interest tracks the rise of physical and virtual conferences focusing on chronic disease and autoimmune conditions. By 2016, the state of autoimmunity communities was a siloed landscape of groups focused on individual diseases, competing for limited funds and share of mind.

stages of dealing with chronic disease

As 2016 progressed, more new autoimmune communities began exploiting digital technology to meet patient demands. These communities are no longer merely for sharing stories. Online communities are virtual conversations where patients exchange information, learn from each other, and unite to spark change. Some examples:

Using a social platform that feels like Facebook, myHealthTeams address 90% of the chronic medical condition population in the United States. Increasing from 2 social network apps in 2012 to 24 in 2016, membership has grown from 30,000 users in 2012 to 750,000 in 2016.

Smart Patients uses an advanced tagging platform to help those with multiple autoimmune diseases garner pertinent information from several communities.

The Autoimmune Registry aims to collect data from autoimmune digital conversations in order to identify common causes and find specific biomarkers.

In addition to these communities, storytelling sites such as The Mighty is also gaining popularity. They help increase general public awareness and grow the community by enabling patients to spotlight their autoimmune journeys.

Wego Health (announced at Health 2.0) has built a social network of more than 100,000 patient influencers. Their network inspires leaders to grow communities, access resources, and collaborate with the health industry. It serves as a marketplace connecting companies to millions of active health consumers.

2. More digital health & patient-centered conferences

The increasing number of digital health conferences reflects growing patient communities expanding their focus to chronic and autoimmune disease. These conferences empower patients to meet physicians and researchers on common ground. Patients can then articulate their needs, expose clinical care gaps, and guide innovation.

Bonnie Feldman speaking at medicine x

As a leading example, Stanford Medicine X has augmented its annual meeting with pop-up patient groups across the country. Even more exciting is the progress Health 2.0 (sold to Himss in 2017) has made. Not only has the main event grown from 500 (2007) to 2000 attendees (2016), but their international meetings have expanded their global footprint to more than 90 cities around the world. Reflecting their patient loyalty, Health 2.0 hosts a meeting of the Society of Participatory Medicine before their main US conference.

Stanford Medicine X and Health 2.0 are just beginning to exploit the growing influence of patient power to change US healthcare. As shown on the map above, other conferences, such as South by SouthWest (SXSW), Molecular Medicine Tri-Con, SCOPE, Medical Informatics World and Ideas LA, have acknowledged that patients’ voices matter and realized that many of these voices concern autoimmune diseases.

3. An entrepreneurial food movement addressing (or exploiting) health-conscious consumers

The Entrepreneurial Food trend has 20th Century roots in dieting as well as in movements such as bodybuilding, life extension, and self-treatment through supplements. It has grown even more in recent years due to the internet revolution. Because this has been a consumer targeted and lightly regulated field, the state of food and autoimmunity in 2016 is one of many options, high noise-to-signal, often contradictory and confusing.

Sub-trends such as Food as Medicine, Nutrition as Treatment, Diet as Panacea, and Consumption as Virtue Signaling are driving the explosive growth of promises that make money for entrepreneurs. Patients, physicians, authors and celebrities funnel market a myriad of diets as new “magic fixes”. Community leaders promise these will reduce inflammation, control autoimmunity, save the planet, and deliver a rainbow of utopian objectives.

flowers and tea to exemplify plant-based foods

There is an ocean full of online recipes for a variety of targeted diets (Paleo, low-carb, FODMAP, gluten-free, anabolic, etc.). Private enterprises produce a tsunami of unverified online information, presuming the efficacy of organic and natural foods, nutraceuticals, and supplements. The extravagant claims and expensive products promoted in these programs promise much to separate you from your dollars, so buyer, beware. Note: We are not endorsing any of these approaches — do your own research and experiments!

Targeted autoimmune diets

Sarah Ballantyne, aka Paleomom, is a pioneer in promoting a specific autoimmune diet: The Autoimmune Protocol. This is an even more restrictive version of the Paleo diet for autoimmune patients. It is modeled after dietary management of metabolic (diabetes, obesity) and cardiovascular disease, emphasizing nutrient-dense organ meats, seafood and vegetables. It simultaneously avoids “bad” foods (e.g., Nightshades, alcohol, individual sensitivities) to improve gut health, hormones and immune system regulation.

For example, Chris Kresser’s diet builds on Ancestral Health (a movement expanding the notion behind the Paleo diet — that we should eat, sleep, and work more like our ancestors did) combining nutrition with functional medicine.

Alternatively, Mark Hyman’s High Fat diet is a Paleo-Vegan combination. It emphasizes plant-based foods and “good” fats: nuts and seeds, olive oil, avocado, coconut oil and fatty fish.

Sara Gottfried’s Hormone Reset Diet takes a different approach that claims to “balance your hormones” by avoiding Bisphenol A and other “hormonally disruptive” chemicals, and controlling cortisol through stress management. It also emphasizes alternative exercise (less cardio, more yoga, Pilates), reducing meat, avoiding processed foods, “fake” fats and artificial sweeteners.

And here is a somewhat skeptical take on popular diets from the Stanford Scope blog

4. Growing interest in functional medicine

Another trend facilitated by the internet is functional medicine. It overlaps with the diet and supplement therapy movement, and it reflects the growing interest in non-conventional medical approaches. The state of autoimmunity in 2016 reflects functional medical practices gaining market share from conventional medical management of autoimmune disease, because many autoimmune patients are frustrated with the state of conventional medical care.

According to the US Centers for Disease Control, demand for non-conventional medicine (holistic, integrative, chiropractic, acupuncture, yoga, etc.) is surging.

woman doing yoga as an example of non-conventional medicine

The Institute for Functional Medicine, a global leader in education and promotion of functional medical modalities, has received 1 million hits on their provider information search site.

The American College of Lifestyle Medicine and the True Health Initiative are also growing due to consumer demand.

Interest in functional, alternative, and integrative medicine testifies to patient frustration with conventional medical diagnosis and treatment. Moreover, it testifies to the increasing curiosity of patients, practitioners, and researchers in understanding alternative root causes of autoimmune diseases.

As interest increases, a flood of new information targeting chronic autoimmune disease management has been released. Online summits, videos, and books sell countless approaches to lifestyle modification intended to prevent and manage autoimmune conditions. Sorting out the wheat from the chaff is a daunting challenge. We suggest countering every visit to a new source promoting a particular approach by reading the skeptical views as well.

A sample of online summits on a variety of autoimmune-relevant topics include:

Autoimmune Summit

Diabetes Summit

Gluten Summit

Functional Forum

Patients and practitioners who developed protocols to heal themselves have written hundreds of books, but this sample will give you the idea.

The Autoimmune Solution by Amy Meyers, MD.

Immune System Recovery Plan by Susan Blum, MD.

The Wahls Protocol by Terry Wahls, MD.

Technology Advances: Tools & platforms for data analytics, scientific research, and digital clinical care

The grassroots trends described above have decades-old roots, many dating to the middle of the 20th Century or earlier. So why did they only take off in the past 20–30 years?

typing on a keyboard engaging in digital health

1. Advances in technology & data analytics

The IT revolution has brought us personal computers, the internet, and social media. Worldwide, smart mobile device connectivity is now ubiquitous, along with the API & Cloud economy (SaaS, cloud storage, apps). This foundation of capital and technology has enabled a host of advances: biological research, biotechnology and biomanufacturing, big data and analytics, digital billing, EMRs, telemedicine, mobile apps, etc., not to mention the online community platforms and entrepreneurs.

The ability to collect, analyze and move large data sets has ignited the growth of sophisticated analytics and the development of new, more accurate personalized algorithms. Such algorithms are making wearables more user-friendly. Beyond tracking steps and vital signs (Fitbit), these gadgets and apps can also track and give feedback about sleep (Oura), breathing (Spire), and posture (Lumo), as well as calorie and nutrient intake. This makes citizen science and quantified-self efforts much easier by enabling collecting, tracking and charting of data over time.

As wearables gain traction with consumers, they are also being used in research, clinical trials, and chronic disease management. Apple is experimenting with how the iPhone and Watch can be used to monitor people with Parkinson’s disease. Other research projects include exploring connections between sleep habits and conditions such as diabetes, heart disease, COPD, and depression.

2. Technology-enabled advances in science

translational clinical applications, including genomics, epigenomics, proteomics, metablonomics, and network analysis

The explosion of new and reinvigorated scientific specialties enabled by biotechnology and big data, from the Human Genome Project onward, now includes new -omics fields (genomics, epigenomics, proteomics, metabolomics, microbiomics, etc.). Such research efforts have supported encouraging advances in immunology. In particular, discoveries of biomarkers, metabolic pathways, and organ interactions (GI-Brain-Immune), move scientific understanding towards a systems biology view of autoimmune disease. Thus, the state of autoimmunity 2016 has been and will be dynamic, as research fuels not only improved understanding but also changes classifications and, eventually, clinical guidelines.

As shown above, systems biology research is increasingly supported by widespread high-throughput techniques and data analysis platforms. These platforms leverage the assessment of genes, proteins, metabolites, and network analysis of complex biologic pathways implicated in specific AID conditions.

The heirarchy of anatomy in microbiome - innate - immune system interactions

Microbiomics

Through this research, we have early evidence that the current epidemic of autoimmunity may be triggered by disruption of individuals’ microbiome ecology.

Microbiomic research is also building a scientific foundation to guide systematic experiments in diet and supplements. For example, support for the changing standard of care for Inflammatory Bowel Diseases from “diet doesn’t matter” (astonishing to realize this was standard of care and still is for many physicians) to subtle or gross changes in patients’ diets to manage symptoms and reduce or eliminate reliance on immunosuppressive pharmaceuticals.

microbiome - innate - immune system interactions are involved in multifactorial diseases

These new bodies of knowledge in immunology, microbiomics, and systems biology also provide a scientific foundation from which to explain and validate or falsify ancient practices of mind/body connectivity. For example, such practices include voluntary breathing techniques, meditation, yoga, exercise and other alternative modalities.

Read On

In the State of Autoimmunity 2016, Part 2, we will review how companies, large to small, are utilizing the advances in technology to provide tools and platforms for digital healthcare. We will also bring everything together to show how we can bridge gaps and reach personalized autoimmune care.

For full resources and references please visit the full version of the State of Autoimmunity here: http://bit.ly/2kvDoae

Get Involved
We are seeking collaborations. If you have business opportunities, please contact me.
1. We are also looking for interested individuals who can help us find and create new sources of data and digital tools to treat, reverse, and prevent autoimmunity.
2. If you are a company working on products and services in chronic disease management that could be tweaked to help autoimmune patients, we want to help bring your work to the autoimmune community.
Please join us in 2017 to expand awareness and pursue the campaign against autoimmune disease.

By Bonnie Feldman, Ellen M. Martin and Tiffany Simms (this report was originally published on Tincture)

collaboration and brainstorming animation

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