By Bonnie Feldman, Ellen M. Martin
Sometimes I find the answers I am looking for in the most unlikely places!
Listening to the Lonely Voices of Autoimmune Disease led me on a hunt to find emerging companies using data and digital tools to help the large and growing needs of the autoimmunity community. To my dismay, after interviewing more than 180 companies to date, autoimmunity is not a target.
Instead, companies are focused on specific diseases like Crohn’s or Lupus, rather than looking at autoimmune diseases broadly.
So I began to wonder if I should give up my search for solutions.
Then, I found the Open Medicine Institute and a kindred spirit in Andreas Kogelnik, MD, PhD. It was an “ah ha!” moment that catapulted my journey in digital health from the trough of disillusionment to the slope of enlightenment.
With joint degrees in medicine, computer science and biomedical engineering, Andy found himself studying infectious disease, which he describes as “data-heavy with a lot of missing pieces.”
During his studies and training, he concluded,
“the medical system has done a great job at treating acute disease, but not so with chronic disease.”
When asked about autoimmune disease he commented that the “labels around autoimmune may be wrong, because they can appear as a random collection of symptoms and syndromes, without an antibody.” This matches my findings that R&D is focused on pre-defined disease diagnoses (IBD, Lupus, etc.) by body part, which may not be monophyletic biological entities. “We need large-scale measurement to begin to find better treatment options.”
And so he opened the Open Medicine Institute (a community benefits corporation) and the Open Medicine Foundation (a 501© (3)) to convert information into knowledge using advances in genomics/biotech, informatics and biosampling.
Using Integrated Data and Digital Tools to Improve the Treatment and Management of Chronic Diseases
With the patient as the center of his focus, he set out to “build a neutral platform where patients can carry their own data, ask questions and donate their samples in a rigorous way.”
This required an open system capable of integrating disparate data sets and making them accessible across existing backend and mobile devices.
Integrated at the front-end, the data can come from a wide variety of sources:
- clinical services
Integrated at the back-end, OpenMedNet can utilize different types of data coming from mobile, text, email, voice, telephone, and other feeds.
Bringing the data together is hard enough, but then we need analytic tools to turn the data into actionable information.
In complex chronic diseases, we both wonder how data and digital tools can help us define “normal” using OpenMedNet. The capability to collect and analyze longitudinal biometric data sets as well as genomics, means that for the first time in history we will have the opportunity to define “normal.”
Aggregating patient data for population-based research, Andy believes,
“every patient encounter should be a research question.”
A Clinic Built for Patients and their Data
As I walked into the waiting room of the Open Medicine Institute clinic, I was not sure what to expect. While working on my Stanford Medicine X talk and workshop, I had imagined how we might help autoimmune patients if we could combine a holistic approach to patient care, like that of the Institute of Functional Medicine with the rigor of individual and population data collection and analysis.
While touring the clinic and the labs, I was awestruck to see the array of data collection and bio-banking capabilities, including microbiomic and genomic data.This was just what I had envisioned was possible for autoimmune patients!
The OMI and OMF initial work is focusing on poorly understood conditions such as chronic fatigue, Lyme syndrome and autism. (Link to press release Jan 27 2015?)
Other case examples include
- Wellness and health management with insurers
- Population disease management
- Community based genetic screening
- Post-infectious disease symptom tracking and support
For autoimmune patients, the light bulb in my head went on, telling me that maybe I just found what I was looking for!
With robust longitudinal data collection and analytic capabilities now including 38+ clinical laboratories, 64 wearable devices, 2,000,000 + patients and 300,000 tracked lives, the OMI and OMF has just begun to scratch the surface of what will be possible.
I will be highlighting the work of the OMI at my upcoming Stanford Medicine X talk and workshop, “What if we could think differently to improve the lives of those with autoimmune disease.”
What do you think has been missing from your care?
How can we build a system from the ground up to help fill “The Autoimmune Abyss?”