The independent news organization of Duke University

Patient as Catalyst

Washington's recent battle over health care has left many of us with questions about the state of the health care system.

It is a system many complain is ridden with skyrocketing costs and limited capacities. A vital component of the U.S. health care system is its ability to discover, understand, and ultimately solve health related problems. This research and development engine is one that Josh Sommer, co-founder of the Chordoma Foundation and a fellow with Echoing Green, an incubator for rising young social entrepreneurs, has tried to improve.

In 2006, Sommer, a Duke freshman at the time, was diagnosed with chordoma, a rare form of bone cancer that occurs in the skeleton and spine. There's no doubt about it, it's an extremely rare disease; only 300 new cases are reported in the U.S. each year (2,100 patients at any given time). Patients experience an average survival rate of seven years.

These startling statistics, coupled with Josh's discovery of the little research done on chordoma, and even fewer resources for patients, inspired him and his physician mother to found the Chordoma Foundation in 2007. The foundation is organizing and leading an international effort among researchers to most efficiently and accurately develop new treatments and to eventually find the cure.

The Chordoma Foundation is following a well-worn paradigm of drug development: working backwards, for a drug to be approved, you need human trials; for human trials, you need animal models; for animal models you need cell line models and biochemical rationale.

So what’s the disruptive innovation? Sommer has put the research process under the microscope and made the patient the center of the research process. In doing so, the foundation has raised the standard of research and improved efficiency and accountability.

One of the foundation's biggest initiatives is the chordoma BioBank, a central repository for  tumor tissue from patients. All researchers who use the BioBank's tissues are required by Chordoma Foundation to report their research findings. This way, research outcomes build upon one another which can lead to a faster and more efficient route to finding the cure. Believe it or not, other biobanks do not require this. With the patient as catalyst, the Chordoma Foundation is raising the standards of science.

Accountability is central to Chordoma Foundation's work, and they have specific goals and metrics to evaluate their progress towards a cure. For example, in the next two years the BioBank plans to collect 200 tissue samples, increase the number of researchers working on chordoma, and through that develop 10 high-quality validated cell lines.

For Chordoma Foundation, reaching scale is not as simple as maximizing the number of chordoma researchers. Scaling up requires a balancing act. Enough researchers need to be tackling the problem but not so many that the foundation can no longer manage and coordinate research efforts.

Sommer explained to us that the heart of the foundation's approach to finding a cure is building bridges and ensuring that every piece of the cure-finding process is in place and ready to go. The foundation is in constant communication with researchers, encourages timely sharing of research findings, and connects researchers to relevant resources. Everything from the foundation's emphasis on quality cell lines and tissue samples to its requirement that researchers report all findings from tissue samples to the chordoma BioBank contribute to a unique and streamlined model that some say is a stepping stone to personalized medicine.

This is the true social innovation behind the Chordoma Foundation. The work that it's doing and the model for research and development that it has created are contributing to something bigger. We see incredible value in Chordoma Foundation's approach to finding a cure or better yet, their approach to solving an extremely difficult and complex problem that affects a small population.

Similar sister organizations are talking with Chordoma Foundation about ways to create a pipeline for rare cancers to go through. Imagine taking Chordoma Foundation's big picture approach and turning it into a replicable model for other rare cancers or rare diseases. Could this model work for the for-profit world as well? What lessons can we draw from Sommer and can we apply those lessons to different contexts? 


Share and discuss “Patient as Catalyst” on social media.