I recently had a discussion about the value of hackathons.
Here was my argument.
The Problem: Cancer Research Doesn't Work
- As Dr. Azra Raza points out, Cancer research hasn't increased age adjusted cancer death rates since 1930 (page 2).
- (The "hump" in the middle comes from Americans learning how to smoke and then how to quit).
- Just 6.6% of cancer patients currently see benefits from existing drugs and at the current rate of progress, it would take more than 200 years for all existing patients to be helped.
- Less than half of clinical trails report results according to statute. (see also alltrails.net ).
The Reason: Research is Science and money centric, not health centric. No Urgency. Not enough Risky research. Siloed Data
- Science Centric: As the FDA's Janet Woodcock points out: Research focuses on Science not Patient Health. (And money is a problem as well).
- And as Fran Visco – Breast Cancer Advocate points out "After 20 years and $2B of grant money, what seemed to drive many of the scientists was the desire to “get above the fold on the front page of the New York Times,” not to figure out how to end breast cancer. It seemed to her that creativity was being stifled as researchers displayed “a lemming effect,” chasing abundant research dollars as they rushed from one hot but ultimately fruitless topic to another. “We got tired of seeing so many people build their careers around one gene or one protein,” she says. “At some point,” Visco says, “you really have to save a life.”
- Leisurely: Research timeframes are measured in in terms of yearly grants, next year's conferences, paper publication deadlines and tenure tracks
- Not terminal patient hospital visits, Progression Free Survival and Patient Lifetimes
- No Risk: Can't have breakthroughs since cancer researchers are especially risk adverse.
- "Risky" 2020 CDMRP funding = 0.09B - and this is for -all- medical research, not just cancer.
- "Riskless" 2020 NIH/NCI funding = $44.9B/$6.9B
- NIH/CDMRP = 500x; NCI/CDMRP = 77x. So by any measure, America's research portfolio is poorly risk-weighted.
- Siloed Data: It's tough for enthusiasts and tinkerers to create something since data is kept prisoner.
A Solution: Hackathons - Patient co-led research and biomedical data analysis for open discovery
- Patient Centric - Patient drives process so that researchers focus on Health, not Science
- Fast - Most of the patients suffer from Rare, Terminal diseases, so speed is essential.
- Risky - A safe space for qualified researchers to have crazy ideas.
- Open Data - Patients supply their own data, which stays within HIPAA
RTTP Hackathon's Track Record: Done Well, Done Cheaply, Done Effectively
- They've done 6.
- Proven Process
- Very capital efficient
- Produced peer reviewed papers (Clemson one, Clemson two).
What we ask hackathon sponsors: Do you have enough risk in your research portfolio?
- Is your research portfolio mix too conservative?
- If so, where will the breakthroughs come from?
Hackathons provide a cost effective solution for adding risk