More from Health 2.0 Spring Fling
The Future of Research
What are we concerned about: Data
Who is involved: Researchers
How do we change research while respecting the history and sociology of Research.
Research is an analogue world.
Researchers find the question then go corral data to get to answers.
What is changing is that data is now being generated as a result of care. Data has gone from rare to abundant. From expensive to cheap.
This is profound disruption.
Trust becomes an even more important element.
Research has a branding challenge. Research is becoming learning.
Only a few may be researchers but we are all learners.
Learning is influenced by roles and perspective. e.g. Doctor as Patient brings a whole new perspective.
Research is insight from data.
How do we take research cycles from 17 years to 17 minutes?
Facing a life expectancy of 7 years and unwilling to accept this limit Josh started a foundation to move research forward.
Chordoma Foundation was established to promote collaboration amongst researchers.
Gone from a handful of researchers to 170 across the world.
Licensed cell lines to 30 labs around the world from a lab in Germany.
This is jump starting research.
2,000 patients with the disease. No one hospital sees a large number of patients. This doesn't give critical mass in one place. The foundation helps to address this.
Access to funding
Access to raw materials
Access to Tools for collaboration
Just held the 3rd annual Chordoma conference. Sparks of enlightenment flew when different experts collaborated. [Ed: this is why http://healthca.mp is so important - the diversity of experience and perspectives]
Peer review process. 1-3 year delay due to submission and distribution process.
Patient Conference: two parallel workshops - 1 for researchers and 1 for patients and their families. Then get them to overlap.
On a campaign to get 1M women to contribute to Cancer Research
47,000 women die of Breast Cancer. Same as 20 years ago.
We need to move from cure to identify and eradicate the cause.
350,000 Women have joined (80% don't have breast cancer)
Email blasts to this army. Dis-intermediate the medical industry. They don't do research well. They get in the way.
Biggest complaint is that there is not enough research.
$1,500 to perform a study. Not typically clinical trials.
Starting to expand beyond Breast Cancer to other diseases.
Cancer Commons - a platform for collaboration.
Large clinical trials are deeply flawed.
Many cancers may be genomically unique.
Population death rates 5% drop in 60 years.
Cancer Commons is open source, real time research.
600,000 Americans die of cancer each year.
Personalized Medicine = Genomically informed Medicine = Medical Research with a unit of 1 = What a doctor practices with his patients every day.
(And a great participant in HealthCamp - http://healthca.mp )
ACCOR is the oldest listserv for cancer in the world.
ACCOR is partnering with 23andMe to give Cancer patients access to genomic information.
Even small incremental improvements (through initiatives like Cancer Commons) have big impacts.
ACCOR helped Novartis speed up drug approval by 2.5 years. First year sales of $1B means the time saving had an enormous impact.
Clinicians sometimes push back against guidelines because it implies a de-personalization of medicine.
We are on the cusp of personalized medicine.
[Ed: The patient's data needs to be incorporated in to the data on which decisions are based.]