LK 130The lonely universe of autoimmune disease
LK 130The lonely universe of autoimmune disease
If you were diagnosed with Lupus or MS and knew your doctor was experimenting on you to find the right treatment, what would you think? That’s the state of the art today in autoimmune diseases.
At least 50 million Americans (twice the number of cancer patients) suffer autoimmune diseases. Each of the 25 or more named diseases is represented by a variety of stakeholders (patients, specialists, researchers), with little sharing of data across groups, and even less across diseases.
Although the cancer and rare disease communities are moving to collect data, share data and turn data into information, and despite the similarities (unmet needs, heterogeneous diseases, poor diagnostics), the “autoimmune communities” have lagged behind in data collection, sharing and analysis, and therefore in improving diagnoses and treatment.
Some reasons autoimmune diseases have been neglected:
1. Like cancer, autoimmune diseases are multifactorial, and there is poor understanding of the contributions of genetic, epigenetic, cell biology, metabolic and environmental factors.
2. Like cancer, autoimmune diseases are heterogeneous: E.g., multiple pathways of inappropriate immune response, and many different antigens and antibodies.
3. The autoimmune clinical landscape is extremely siloed, with multiple specialists (gastroenterologists, dermatologists, rheumatologists) and very few clinical immunologists.
4. Drug development has been difficult, with a history of failures (e.g., lupus) and the need for multiple attempts to succeed (RA, MS).
5. Where we do have treatments (RA and MS), we lack protocols for matching patients to drugs differing in MOA, effectiveness and cost, thus physicians tend to try the cheapest drug first.
If big data (and technology) have helped in cancer and rare disease, can they help in autoimmune disease, too? How can data support research in –omics and immunology to improve prevention, prognosis and
We need three things: To collect the data, and share it with those who can make it useful.
1. Acquisition: What if we had initiatives like Cancer Commons and Smart Patients for autoimmune patients to collect and donate data?
2. Share: What if we could scale efforts like Tidepool and Chrohnology across the large and growing spectrum of autoimmune diseases?
3. Analysis: Can we apply pattern recognition (like Ayasdi and GNS) to redefine understanding of the autoimmune disease spectrum? Perhaps there are more than two types of diabetes. Could crowd-sourced clinical trials improve drug development success? Could competitions such as Kaggle help sort out treatment protocols?
What can we learn from the cancer and rare disease communities to pull the technology levers and get started, so that
doctors will no longer have to experiment on their autoimmune patients!
How can we make autoimmune communities less lonely?
As principal of DrBonnie360, Bonnie Feldman brings a 360-degree view of private and public healthcare to her consulting work, which includes business development, market research and communications in newly emerging markets.
Bonnie has earned a broad and deep understanding of the players and the playing field in Health 2.0/3.0, life science capital markets, and healthcare practice.
Most recently, for “Big Data in Healthcare- Hype and Hope” she interviewed more than 40 Big Data experts, identifying three trends in the use of Big Data forming the emerging healthcare data ecosystem. A slide show and white paper published by Rock Health, has been enjoyed by more than 75,000 global professionals. Subsequent work has been enjoyed by the O’Reilly StrataRx community.
Previously, she interviewed 50 experts in behavioral economics and psychology, gaming, new media, technology and healthcare, to write “Mobile, Social and Fun: Games for Health,” published by MobiHealthNews. Her research unveiled an emerging ecosystem of companies using gaming mechanics and online support to spur patient engagement – from managing chronic disease to encouraging health and wellness.
On the analytic side, after working as a health services researcher at the Rand Corporation, she worked on Wall Street as both a buy-side and sell-side equity research analyst, where she followed changing markets and rapidly evolving companies across the spectrum of healthcare. Tackling the problem of ineffective investor presentations, she developed a methodology that uses bottom-up-analytics, supported by visual storytelling to create presentations that excite and engage audiences.
In practice, as the builder and owner of two dental practices, she managed finances, business development, staffing, operations and patient care as well as performing claims review consulting for Prudential.
She holds a BA in Economics, a Doctor of Dental Surgery, and an MBA in Finance from the University of California, Los Angeles.