First-time experiences are often marked by an intriguing spirit of curiosity and discovery. This is the excitement I felt as I attended my first FasterCures meeting in San Francisco this month.
For a long time now, there has been a discussion of a cross-disciplinary collaboration in autoimmune disease. Patients want it, as do many healthcare providers, yet still others remain entrenched in a specialist-based disease system, examining disease symptoms and body parts in isolation and losing sight of the bigger immunological picture.
I have been a contributing voice to this conversation, advocating for a shift from the current fragmented system to a more collaborative, holistic approach. I was excited to hear like-minded voices sharing their ideas and innovations on numerous panels at Faster Cures.
We are living through a time of unprecedented technological convergence, with new forms of big data such as genomics, proteomics, and metabolomics, moving understanding from a reductionist model of disease (fixing single causes) to a systems biology model of health (preventing disease, optimizing well being).
The digitization of new data sources suggests that data science must be part of a collaborative research model, as discussed by the panel Medicine Needs Data Scientists. However, this notion is not immune to the dangers of “over-hype.” Atul Butte’s panel eloquently describes how artificial intelligence and machine learning can provide new hope for medical advances, and how we can differentiate this concrete potential from substance-free hype.
Beyond the conference – Discovering a treasure trove of online resources
Beyond the panels themselves, I felt as if I’d won the jackpot when I discovered the treasure trove of information available on the Faster Cures website. These resources support and enhance many of the same themes I’ve discussed around autoimmunity, including:
- Saving Lives By Saving Time: shortening the time to diagnosis and effective treatment of autoimmune diseases may reshape patients’ health trajectories.
- The Importance of the Patient Voice: Patients, themselves, can play a powerful role in raising awareness about the increasing incidence of autoimmunity, as well as improving patient registries, contributing to research and participating in clinical trials.
- The Science of Patient Input: Integrating changes based on patient input may streamline research, development, and medical practice processes and assure faster progression from ideas to implementation.
Moving from aspiration to application
One of my main messages as an autoimmunity advocate has been the necessity of moving from problem identification and awareness-spreading to an action plan. FasterCures frames this pivotal discussion as “moving from aspiration to application”.
I refer to much of the stagnancy of progress in autoimmunity as stemming from a “language” problem in healthcare—patients, providers, and researchers are often using different vocabularies.
Claudia Williamson’s panel Health Citizenship: Creating a New Social Compact for Health articulated some of these same issues. Panelists discussed the importance of challenging assumptions and reframing conversation around the role of patients in research. They agreed that humility, active listening, and an open mindset are key to collaboration.
Continuing with a discussion of language differences between different stakeholders, Luke Timmermans’ panel Tech Culture Meets Medical Research took to the stage. Panelists emphasized the concepts of being humble, asking the right questions, and focusing on transparency between patients and providers. Both panels encouraged all of us to move from supporters to problem solvers, whether we are patients, part of patient support systems, or medical professionals.
The fastest approach to fastest cures – Impact investing and venture philanthropy
Pulling these concepts together, I am eager to see the following Venture Philanthropy powerhouses tackle what may be termed an “autoimmune moonshot”:
- The Chan Zuckerberg Biohub – With an overarching goal of eliminating disease, they are currently collaborating with UCSF, Stanford, and UC Berkeley, and have designed a ten-year experiment that brings scientists and technologists together to solve big healthcare problems.
- The Parker Foundation – This $250M immunology investment is bringing together six top-ranked institutions and allowing them to collaborate with reduced bureaucracy. In April 2016, the Foundation announced a $250 million grant to form the Parker Institute for Cancer Immunotherapy.
- The Helmsley Charitable Trust – This foundation employs a collaborative, results-oriented approach to improving lives. It has made 1,495 grants, totaling $1.635B in areas of basic and applied research, including Crohn’s Disease and Type 1 Diabetes.
To learn more about venture philanthropy in medical research, Faster Cures has created the TRAIN Central Station, where foundations that fund research may share their best practices, exchange ideas, and find relevant tools and resources.
Related Content: 5 Tips for People Living with Crohn’s Disease
New ideas that may apply to autoimmunity
I have been a long-time admirer of the work of Kathy Giusti’s Multiple Myeloma Research Foundation (MMRF), which pioneered collaboration among stakeholders and has been able to bring 10 new multiple myeloma drugs to patients in need of them.
The Michael J. Fox Foundation has a laser focus on finding a cure for Parkinson’s disease. Since 2000, they have funded more than $750M while creating a variety of novel consortia, as shown below:
Another novel approach is being taken by Cohen Veteran Bioscience, currently rethinking how we study diseases of the brain, identify new targets, and advance precision medicine. Their roadmap uses tools that may also be beneficial if applied to autoimmune disease.
Looking at the meeting with deep curiosity from an autoimmune perspective, I discovered specific examples of autoimmune application:
- Helmsley Charitable Trust is working to find a cure for Crohn’s disease, as well as to prevent and reverse Type 1 Diabetes (T1D). Starting with the creation of T1D exchange, they are now conducting clinical trials in Europe to explore screening interventions for Type 1 Diabetes at 3-6 months may facilitate these goals.
- Numedii is looking to use big data to help repurpose drugs already in the pharmacopoeia, which could include drugs for autoimmunity.
- Kenneth Rainin Foundation is doing innovative research in Inflammatory Bowel Disease, including clinical trials to examine the effects of diets such as the Specific Carbohydrate diet and Low-FODMAP diet. Highlights include a featured story of Dr. David Suskind of Seattle Children’s, a pediatric gastroenterologist researching the Specific Carbohydrate diet.
Replays from the entire Faster Cures meeting may be accessed here.
Before attending Faster Cures, I was frustrated by the apparent lack of progress in autoimmune research. Now, walking away from this meeting and analyzing the open-minded, collaborative work of these venture philanthropists, I see a new template for autoimmune research.
What if we took the ideas of venture philanthropy, created consortia similar to the MMRF and the Michael J. Fox Foundation, established collaborators like those of Cohen Bioscience, and applied these approaches to solving “An Autoimmune Moonshot?”
Is anyone out there already working on this approach? If so, please let me know by leaving a comment.
This post was co-authored by Ellen M. Martin
Bonnie Feldman, DDS, MBA
Dr. Feldman is an autoimmune patient advocate and an expert in digital health, the oral and gut microbiomes, and immune-mediated diseases. She is a frequently invited speaker and panelist at national and international conferences including TEDx, SXSW, and Stanford Medicine X.
Currently, she is the Founder and CEO of Your Autoimmunity Connection, a consultancy that through research, consulting, and other professional services, assists clients offer innovative products and services to people with chronic immuno-inflammatory diseases.
Previously, Dr. Feldman was a practicing clinical dentist. As a dentist, she built two dental practices and a consulting business from scratch. Then, armed with an MBA in finance from the UCLA Anderson School of Management, she worked on all sides of the Wall Street equation - sell side, buy side, and investor relations.
Her multimedia work has appeared in numerous online venues such as Forbes, Medium, Tincture, and Thrive Global. She has also been featured in podcasts and documentaries, written various white papers demonstrating deep subject expertise, and created presentations and blog posts that demonstrate her exceptional skills in the art of science storytelling.
Motivated by her desire to help future generations thrive, Dr. Feldman takes her four lenses (dentist, Wall Street analyst, digital health consultant, and patient) to seek out solutions that provide the best of conventional, functional, and digital medicine to improve chronic disease management for all patients.
Comment will held for moderation