"Dreaming of Tenure and IPOs While Patients Suffer..."

This is 15 minutes long. I think it is worth listening to.

http://youtu.be/m4Pvq4sldbQ

Addresses questions of patient / citizen participation

The guy speaking is Dr. Stephen Friend

Stephen Friend says in his written introduction:

I wonder what it will take to transition biomedical research to a haven for rapid learning, networked team approaches, and sharing insights that have been powering up the software industry and enabled physicists for decades. I wonder what it will take for citizens to rise up and say the current reward structures in academia where the majority of the NIH/government grants (that's your money) is given to scientists who expect to not share their insights until submitted to journals, and current operation models for biotech where VCs patrol for breaches in secrecy around insights they have made about human diseases such as Parkinson's using samples from patients till they can take out patents. We need to show how a world of open science, building off of each other's work can be rewarded, to show how challenges and open competitions lead to sharing.
Dr. Friend is the President of Sage Bionetworks. He is an authority in the field of cancer biology and a leader in efforts to make large scale, data-intensive biology broadly accessible to the entire research community. Dr. Friend has been a senior advisor to the NCI, several biotech companies, a Trustee of the AACR and is a AAAS and Ashoka Fellow as well as an editorial board member of Open Network Biology. Dr. Friend was previously Senior Vice President and Franchise Head for Oncology Research at Merck & Co., Inc. where he led Merck's Basic Cancer Research efforts. Prior to joining Merck, Dr. Friend was recruited by Dr. Leland Hartwell to join the Fred Hutchinson Cancer Research Center's Seattle Project, an advanced institute for drug discovery. While there Drs. Friend and Hartwell developed a method for examining large patterns of genes that led them to co-found Rosetta Inpharmatics in 2001. Dr. Friend has also held faculty positions at Harvard Medical School from 1987 to 1995 and at Massachusetts General Hospital from 1990 to 1995. He received his B.A. in philosophy, his Ph.D. in biochemistry and his M.D. from Indiana University.

Video
John Wilbanks:
Many of the biggest impacts of technology have been driven by monopolies and their network effects. The question is what kind of monopoly we choose, and what impacts our choices create. When we choose open standards as our monopolies, we get vast open networks -- HTML, TCP/IP, and other systems where anyone can compete. When we choose walled gardens as our monopolies, we get a very different results -- Apple, Facebook, and Twitter control precisely how and when competition and entrepreneurship can happen. We're faced with this choice right now, and the decisions we make will define the next twenty years of technology in health.
John Wilbanks
Kauffman Foundation for Entrepreneurship

John Wilbanks works on open content, open data, and open innovation systems. He is a Senior Fellow at the Kauffman Foundation and a Research Fellow at Lybba. He's worked at Harvard Law School, MIT's Computer Science and Artificial Intelligence Laboratory, the World Wide Web Consortium, the US House of Representatives, and Creative Commons, as well as starting a bioinformatics company. He sits on the Board of Directors for Sage Bionetworks, iCommons, and 1DegreeBio, and the Advisory Board for Boundless Learning. John holds a degree in philosophy from Tulane University and also studied modern letters at the University of Paris (La Sorbonne).

http://www.youtube.com/watch?v=aGaqD...VrAcY4MQ19NRHD

That "corruption of denial" insight rather brilliantly sums up a very complex issue. We look at that bolded statement and think how can people do that to one another? How can biotech researchers withhold key information that might alter the the lives of millions who suffer needlessly, or the FDA just let Amgen off the hook, or take eight years to "fast track" Duodopa which already has a proven track record?
I often wondered how the people who have the power to make a difference could actually not feel compassion or shame, but now I think I get it. They deny things that things could be different because they see themselves as the good guys. Researchers and doctors are noble doers in our a society; they can restore life, or make pain and suffering go away. Is it that they so identify with this role they can't possibly see themselves as operating under any dubious influences like gifts from pharma, ease of falsifying research data, or big payoffs, so they deny the corruption occurring around them. It is quite a nifty little defense for anyone casting a critical eye on their shenanigans because they want to help you, how could they possibly do anything that might hurt you. It's as if research is saying "Don't forget we publish or perish," even if it takes another 50 years, and millions still die with it (never, of it), "it's all good because we are trying to cure you." Do we have PD, we have Chronic Wasting Disease? They publish, we perish.

Thanks Bob, an excellent video.

Highlights of the Friend video IMHO:
- personalized medicine (e.g. statins are ineffective on about half of people);
- the comparison between the military/industrial complex and the medical/industrial complex;
- the citizen as patient/funder/researcher;
- the big data, open data, open competition modelling approach (make the data available to everyone, pose a question, e.g. can you classify breast cancer - took just 6 weeks to beat current methods).

MJFF are running a PD competition.

John

Thanks for this thread...I've often wondered how it is that our pets get better care than we do. I think it's because (1) there is really no pet insurance (although I am starting to see it advertised) (2) almost every vet I have known was in it because of a deep love for animals, and they cannot bear to see them suffer any more than their owners (compassion, a driving force) and (3) most vets know if they don't fix the problem, it's goodbye, customer. Not many pet owners can afford to "treat" a problem for months or years, or "try" a bunch of different meds to see if they "help".

The other day our daughter was sick and as I was driving her to the doctor's office, I realized our vet was just up the road. I seriously considered taking her there first, since she sounded like a schnauzer when she coughed, and I was thinking, the vet would probably have a better idea of how to actually help than the doc. But she didn't like my idea, so we went to the doctor's office....guess what? We got a script for antibiotics, even though the doc said they might not help, but "they couldn't hurt". This is our medical system. It helps to understand how we got where we are (thank you, pharma) if you read "How Doctors Think"-all geared towards a diagnosis and rx.

Thanks to Bob Dawson I have joined your community because I feel the time is now for patients to push harder - to ask their own questions and to push researchers to share their data sooner.

At Sage we are gaining a foothold in several communities thanks to help from the RWJF. Originally we had hoped patient with Parkinson's would want to start a longitudinal study that had them sponsoring each other to build up a deeper more interactive way of probing the disease. Don't know if that interest is still there.

Dr. Friend,

Thank your for reaching out to us! It is so nice to know that there are scientists who have the courage of their convictions; I cannot imagine it easy to speak what you believe so openly, especially when many others around you see little need to change.

This is the first of a few questions I want to ask; it's not often we have researchers joining us, so I am taking full advantage.

As I listened to your talk I could not help but think of the Aaron Swartz tragedy; I see him as one of our unsung heroes. In my mind, his trial is an example of one of the major impediments to translational and patient led research that is the corporate ownership and control of information by academia, publishers, and database services. The case involving JSTOR, MIT, and Swartz are a prime example of what we are up against when trying to participate in our own care. It is ludicrous that patients hit paywalls having to pay for what is 'often publicly funded research. Is MIT's decision to go on with the prosecution an example of corruption of denial? Where do you see the role of information control in your vision for a better research process?

Finally, I wanted to add that the professional associations of our doctors can work against us; especially with PD which has a fairly high misdiagnosis rate. With us, the American Academy of Neurology sets forth guidelines on diagnosis and treatment; they can end up becoming rules or dogma written more for doctor benefit than patient. There are so many competing interests. It feels like David has to conquer more than one Goliath to make this happen.

Laura

The kaggle contest mentioned in previous posts has now finished, and a winner has been announced (see below).

Over 600 people downloaded the Parkinson's data.

In my view this has been a great success.

MJFF are to be congratulated.

http://www.reuters.com/article/2013/...e0+PRN20130424

John