At the suggestion of Bob Dawson I thought I would throw this out there. Having lived in Academia, BioTech and Industry (Google or youtube- Stephen Friend) I have come to the conclusion that the lack of sharing data and ideas among scientists and the lack of engaging patients as partners and the lack of engaging their knowledge is the most problematic aspect of our inefficient medical research today. To build better representations of disease that couls support new therapies we need to act in more sustainable and sharing ways.

We at the non-profit Sage Bionetworks have been working with many patient communities. Many of these are now starting up well in cancer and diabetes.. You can google Sage and Congress to see what we are doing in April.

I want to help patients realize that unless they demand more sharing and open exchange of data that the work will not proceed efficiently. I was sad last year when we approached at well known Parkinson's Foundation with the idea of collecting the narratives and questions directly from patients and wanted to allow the patients to frame the questions they wanted the scientists to answer. I was told that they already have the top scientific experts so they know what should be worked on and that our idea of having patients chose where their funds went- including supporting the genomic analysis of other patients with Parkinson's was naive and non-productive. If you feel otherwise please tell me somehow and we will help. We need activists

thanks for posting again.
it takes awhile for what you are trying to accomplish to sink in.

Article from the year 2009:
Stephen Friend had it all at Merck. The lucrative salary, the national media fame, the respect of peers, the power to snap his fingers and command a corporate army of some of the brightest minds in biomedicine. This year, he gave it all up for a startup dream.

Friend, 54, is best known in Seattle as the founder of Rosetta Inpharmatics, the cutting-edge genome analysis company that was acquired by Merck in 2001 for more than $600 million.
For the past eight years, he worked on the East Coast as a senior vice president for Merck, the pharmaceutical giant, and spent much of his time running the company’s worldwide cancer research. Now he’s back in Seattle, dreaming big again as founder and CEO of a global nonprofit collaborative called Sage Bionetworks.
http://www.xconomy.com/seattle/2009/...ngle_page=true

This is the Sage website: http://sagebase.org/

Commons congress
http://sagecongress.org/WP/

The first thread started by Dr. Friend on this Forum is here:
http://neurotalk.psychcentral.com/thread184054.html

Dr. Friend,

First I want to welcome you and thank you so much for reaching out to us in this way. We are unique in that we are nearly the only PD patients' group who asks the questions that all patient's need to ask. Our chief concerns are the research has been in a state of stasis for some 50 years (DBS is no innovation, imho - it just tries to make us less dependent on pills and is risky in its own right). The attitudes we seem to get are "well, you have levodopa, so what's the problem". There are so many problems, so where do we begin? I will try to highlight a few key problems and/or hurdles as I see them:

1. Over 50 years spent on what has been called the "Dopamaic view point of PD" when there it has long been knowledge that different brain areas and neurotransmitters are impacted. This view is still predominant in main stream media, but that it appears to continue as the driving force in research is appalling.

2. No unified theory on what PD is or what likely causes it. It is more likely a syndrome, yet is treated as one disease. Ironically, this seems to play out in the patient community; we have several so called patient non-profits that really do little to help bring patient, doctor, and researcher together.

3. No meta-analysis or research oversight. I was chastised for saying that if we can send people to the moon why can't we apply similar approach to eradicating disease. I would say that at this point that the scattershot method of research is a fail. If we had a dedicated team with a real mandate to solve this, we would not be in this forum right now.

The largest impediment to all this is us; I dare say. Too few of us question the status quo. The few of us who do feel overwhelmed because we face the traditional doctor and research as expert centric view of medicine in which the patient defers to them. They may know about it, but we live it.

Doctors, medical researchers, and colleges that perpetuate the notion that a degree confers a person absolute authority. To elevate the patient to partner is very threatening. This is why the ivory tower is so cut off from the reality of the patient. Our illness is treated as some esoteric, complex phenomenon that only "professionals" can grasp. It's not that we cannot grasp it cognitively, but more we are cut off by the academic and corporate control of information and data related to our condition; whatever happened to the notion of translational research?

As I see it, the problem is everyone is far too comfortable with this system for varying reasons; all self-serving. To the doctor, scientist, pharma, and FDA, we are a salary, career, prestige, and a retirement. The patient, to become an activist, must first accept that they are sick, so many just go along in denial or not wanting to take on the added stress of bucking the system.

I have said publicly more than once we need to be more vocal like the Aids activist group ACT Up, but very few people are interested in . We do not need to be quite as aggressive but we need something that gets attention. As much as I respect what Parkinson Action Network and Michael J Fox does for us, they are far too much within the system to make our voices heard.

Laura

(These are all my observations and thoughts-not speaking for all here)

Your points are so well stated. I spent time as a researcher, as one in Industry and the very good meaning people within such establishments will need to be part of the solution. I have called it the "Medical Industrial Complex" because like the "Military Industrial Complex" that EIsenhower worried was hurting troops from getting what they needed- the Medical Industrial Complex feeds itself very well but has an element that one of my Ashoka fellows has called "The Corruption of Denial".

We need to find activated patients who want to do more than just raise money. If I had one thing I think might help it would be to build a pilot project where the patients partnered with scientists ready to share their insights prepublication to engage a longitudinal study. I will be out all week but have been encouraged by PArkinsonsUK and several EU groups where there is a growing sense of not tolerating the staus quo. (Till next weekend)

Dr friend
Thank you for your post. This is a quick note to welcome you to this forum and l am so glad to read your post .
I am a biologist and a PD patient, worked in academia and biotech and I feel the same way as you do .. it is time for a change.
Thanks again.
Sorry for typos.
Girija

QUOTE=Stephen Friend Sage;960081]At the suggestion of Bob Dawson I thought I would throw this out there. Having lived in Academia, BioTech and Industry (Google or youtube- Stephen Friend) I have come to the conclusion that the lack of sharing data and ideas among scientists and the lack of engaging patients as partners and the lack of engaging their knowledge is the most problematic aspect of our inefficient medical research today. To build better representations of disease that couls support new therapies we need to act in more sustainable and sharing ways.

We at the non-profit Sage Bionetworks have been working with many patient communities. Many of these are now starting up well in cancer and diabetes.. You can google Sage and Congress to see what we are doing in April.

I want to help patients realize that unless they demand more sharing and open exchange of data that the work will not proceed efficiently. I was sad last year when we approached at well known Parkinson's Foundation with the idea of collecting the narratives and questions directly from patients and wanted to allow the patients to frame the questions they wanted the scientists to answer. I was told that they already have the top scientific experts so they know what should be worked on and that our idea of having patients chose where their funds went- including supporting the genomic analysis of other patients with Parkinson's was naive and non-productive. If you feel otherwise please tell me somehow and we will help. We need activists[/QUOTE]

"In order to place before mankind the common sense of the matter in terms so plain and simple as to command their assent."

I agree the need for continued rethinking of ways to increase the productivity of science -- particularly in how/what it delivers for patients --- must continue. At MJFF we have been active in putting forth new mechanisms for improving this process (funding high-risk research, crafting unlikely partnerships, inserting a robust patient voice, building/distributing field-wide tools) including building portals for sharing data.

Some exciting examples are already active such as the extensive data being collected from PD patients and controls for the PPMI biomarker initiative. Many of you know that the study has been underway for about 2 years now and the data collected has been available for 18 months already and will continue to grow as the study continues. Over 40,000 data downloads have already occurred and dozens of scientists have applied for access to the biospecimens as well. Findings are already in press. So, very exciting to see this data shared globally. You can check out the data portal at www.ppmi-info.org.

Some of our programs focus on sharing other key tools for research (not exactly data sharing but of critical value to speeding research process too). For instance, several years ago we stopped funding the creation of pre-clinical models at academic labs given the challenges we encountered in getting the models out to other research colleagues. We now spend millions a year on creating and distributing such tools (not just animals but assays, vectors etc). All we ask when we share is that researchers post their findings about the utility/functionality of the tools on our web site so other researchers can benefit...kind of like crowd sourcing opinions about the best/most valid tools. This has been a win win for everyone (except maybe the tech transfer offices at Universities).

Our Fox Trial Finder tool collects self-reported phenotypic data from patients to facilitate suitable matches for clinical trials. We are currently expanding on this tool working to add features that help patients store disease management data to share with their physicians that can also enhance their profiles for clinical study participation. This is a big area for growth at MJFF in 2013. And, as envisioned, provides a platform for capturing patient contributed data---going far beyond what is typically collected by physicians today --- more to come on these enhancements as they roll out this year. This has been a very active area of input from our patient council (22 members strong -- from regions throughout the US plus one Canadian).

Another example might be the data challenge/prize we launched last week "Predicting Parkinson's Disease Progression with Smartphone Data" that has already been discussed in previous threads... this is a pilot for better understanding how researchers can be attracted to use data we already have...it is (hopefully!) a way for us to bridge data sources and uses. (PS in three weeks' time we've already seen 435 downloads from 18 countries --- with the deadline is still 28 days away ... citizen researchers welcome!)

Overall we see many folks thinking big in this area and have worked to understand the best possible applications to PD. Very exciting times indeed and many challenges too. Conductor reiterates an important message for patients who can contribute data/participate in studies...you are a crucial part of the solution. We are working on more and more ways to engage patients to contribute data into the research process...stay tuned!

Best, Debi

Thank you for your post, and thanks for keeping us up-to-date – so much good stuff going on at the foundation! You mentioned robust patient voice. If you have a minute, would you elaborate on that? Thanks again. Your presence here is really appreciated.

Retracing Steps

Sage Bionetworks aims to show that transparency and sharing are key to ensuring research reproducibility.

http://www.the-scientist.com/?articl...tracing-Steps/

..."A growing body of research has highlighted scientists’ inability to reproduce one another’s results, including a 2012 study that found only 11 percent of “landmark” cancer studies investigated could be independently confirmed. This dismally low reproducibility figure is estimated to be even lower for large-scale studies because outside reviewers are often stymied by a lack of detailed protocols and access the resources needed to perform the analyses...

..." Seattle-based Sage Bionetworks is taking a different approach—one that “makes reproducibility a byproduct of the research process itself, rather than simply a burden at time of publication,” said [/B]Stephen Friend, the organization’s co-founder, director, and president.[/B]

Sage’s solution? An open-source computational platform, called Synapse, which enables seamless collaboration among geographically dispersed scientific teams—providing them with the tools to share data, source code, and analysis methods on specific research projects or on any of the 10,000 datasets in the organization’s massive data corpus. Key to these collaborations are tools embedded in Synapse that allow for everything from data “freezing” and versioning ...