My first Sage Congress was a whirlwind of information and shared ideas. I'm privileged to have met such committed, caring and brilliant people. By the end of the Congress, two things became clear.
- Current closed-science models of developing new treatments are not working
- Hope resides in open, people-centric approaches
Cameron Neylon illustrates the problem in his Science In The Open blog post (excerpted here):
- Attempts by a variety of big pharma to replicate disease relevant results published by academic labs failed in ~80% of cases (see for instance this story about this commentary in Nature).
- When a particular blood cancer group was asked what factor about their disease was most to them, they said gastro-intestinal problems. No health professional had ever even considered this as a gastro-intestinal disease.
- Jamie Heywood spent $25M of his own money on attempting to replicate around 500 published results that were therapeutically relevant to ALS and could not repeat the findings in a single case.
- A cancer patient, advocate, and fundraiser of 25 years standing said the following to me: “We’ve been at this for 25 years, we’ve raised over $2B for research, and new patients today get the same treatment I did. What’s the point?”
But it's not all gloom and doom. Despite the too frequent failures, there are successes. Successes often coming from outside the traditional institutions like academia, government, pharma and the life sciences. Successes that seem to focus less on raw science and more on people.
Dr. Susan Love shared how the Human Papilloma virus was understood not by disease modeling, but by observing people and behavior, and by common sense connecting the dots. She taps into a 325,000 person Army of Women to bring people to the fight against breast cancer, and makes it clear that labels like "patient" create levels of status that inhibit progress. There's no difference between any of us and "patient" except for a diagnosis.
Larry Lessig calls to end corruption in the copyright economy that blocks sharing of important science. Sure, he provides plenty of data and information to make the case - but in the end he speaks to the human spirit of freedom to call us to action.
Jamey Heywood tells the story of his brother's courageous battle with ALS, and how Patients Like Me provides tools to separate the scientific wheat from the chaff by putting personal people experience at the center of the equation.
As I sum it up, my Sage Congress 2012 experience reinforces the need to be both humble and bold in our work to affect those living with disease.
Humble to assure that science and technology, no matter how compelling and interesting, are not pursued as closed ends unto themselves. Take a humble posture that challenges the incentives and motivations driving our work. Put people ahead of our labs, schools, companies and governmental institutions. Know the perspective and tap into the knowledge of those who we wish to treat and cure. Every "N of 1" is valuable and as valid (sometimes more so) than the group comparison statistics we use today to drive forward the development of treatments.
And we'll need to be bold. Bold to move beyond our institutions and include perspectives and input from those who are in need, are underserved and have motivation to contribute - they may not be conventional scientists. Bold to share our data and information for others to build off of, react to, add to and critique outside of our control or intent. Bold to gain the wisdom of people outside our walls - on their terms, not ours.