[paula_w]

oops forgot: http://www.pdonlineresearch.org/


Looks outstanding...we should learn another college degree following this one by MJFF.

thanks for what looks like a great endeavor. you just keep them coming - we are grateful and you are getting us a little closer and definitely hearing us.

paula

make that a lot closer.

[reverett123]

It is a good looking site but the only way that I could find for patient comment was to pretend to be asking a question. I do appreciate the problems that wide open patient commentary might pose and would like to make a suggestion. Why not provide a means for patients to submit comment to a small group of trained moderators for consideration? If they feel that the given comment adds to the goal, then post it. Screening in this manner would uphold decorum while taking advantage of patient knowledge.

Originally Posted by paula_w

oops forgot: http://www.pdonlineresearch.org/


Looks outstanding...we should learn another college degree following this one by MJFF.

thanks for what looks like a great endeavor. you just keep them coming - we are grateful and you are getting us a little closer and definitely hearing us.

paula

make that a lot closer.

[Ronhutton]

Rick,
I agree, this seems to be a forum for academics, not patients.
I applied to join as a person with PD, but even then, I was fortunate to be able to say I had a Ph.D when asked for academic qualifications.
Despite joining as a patient, I had to choose a field of interest, and chose etiology!! I also had to state a job title and affiliation.
My application is being considered.
Although you can ask a question, there does not seem to be a possibility to submit a paper. I had hoped to get an opinion on my Blood-brain barrier ideas.
Ron

[reverett123]

At present it seems to be a "closed shop" and much like the other orgs. The problem with academic control is that new ideas have to get past so many gates before discussion. And there is a certain amount of intimidation which helps to maintain the status quo.

One has to wonder about the current system with the Olanows and Agids at the top of the pyramid with hundreds of papers to their credit. Why is this power structure permitted to maintain its hold when it has been such an abject failure? One answer is found in the design of sites like this where the maverick is shut out and the patient is reduced to meekly submitting a question to the failed institutions. I wish I could get MJF out on my little fishing boat for an afternoon without his handlers to explain all this.

Originally Posted by Ronhutton

Rick,
I agree, this seems to be a forum for academics, not patients.
I applied to join as a person with PD, but even then, I was fortunate to be able to say I had a Ph.D when asked for academic qualifications.
Despite joining as a patient, I had to choose a field of interest, and chose etiology!! I also had to state a job title and affiliation.
My application is being considered.
Although you can ask a question, there does not seem to be a possibility to submit a paper. I had hoped to get an opinion on my Blood-brain barrier ideas.
Ron

[lurkingforacure]

They have access to all their academia sites, papers, journals, etc. that the PD patients do not. Websites that sound like they are for, or include, PWP but do not simply further diffuse an already fractured resource, not to mention do nothing to move things along towards a cure when they are the same-ole, same-ole.

I don't understand why Brin has not used his resources (and I'm not just talking dollars) to help change things in the direction R&R mentioned above.

[Debi Brooks]

Great to see that several of you have taken a look at our newly launched website, www.PDOnlineResearch.org (PDOR). I encourage you to visit often to get a sense for the conversation taking place amongst researchers from various areas related to PD science. The site is an experiment and we are enthusiastic about its potential. The internet has changed the way we do so many things in our lives – how we shop, communicate, get data, find entertainment --that it seems time for it to also impact how research is done in an equally powerful way.

We convene many meetings throughout the year at MJFF, bringing researchers together from all over the world, providing a collaborative environment and collective expertise that keeps the science moving toward a cure. This site attempts to engage the scientists in similar way and go further to extend the conversation to more key players...something that has never been accomplished on a computer screen...PDOR is not just a place to download a paper, it's about getting to the bottom of the papers' relevance for treatment. It's about linking the thousands of highly specialized experts to each other and synthesizing and elevating their collective wisdom. It's about furthering the discussions around the difference between interesting science and science that is relevant for new treatments. It's about zeroing in on real challenges and speeding up the solutions.

We hope PDOR will become a virtual workshop for researchers and clinicians in academia and industry. We intend to learn from the PDOR conversation and act based on its community-generated ideas. We hope that other funders will also find value in the PDOR discussions--particularly in the opportunity to hear from more voices and get considered inputs from technicians across the field.

This new platform also allows us the opportunity to invite comment and questions from the patient community. Your participation is an important element of this new venture. Questions, comments and ideas from the non-scientific observing community will be regularly incorporated into the discussion on the site. At MJFF we are excited to watch this community grow and we invite you to be a part of it. And, of course, you can always provide feedback to me directly here at NeuroTalk.

Best, Debi

[girija]

Hello Rick,
I was just checking out the pdonline research and honestly I donot think its a closed shop. It may be structured more for research types (with protocol-related questions), I think it will be a good place for scientific discussions. Let us post or ask our favorite questions and see what comes out of it. I checked for a few names I trust, and they are already members. its always nice to see familiar names!
Anyway, this is my take on it

girija







QUOTE=reverett123;518527]At present it seems to be a "closed shop" and much like the other orgs. The problem with academic control is that new ideas have to get past so many gates before discussion. And there is a certain amount of intimidation which helps to maintain the status quo.

One has to wonder about the current system with the Olanows and Agids at the top of the pyramid with hundreds of papers to their credit. Why is this power structure permitted to maintain its hold when it has been such an abject failure? One answer is found in the design of sites like this where the maverick is shut out and the patient is reduced to meekly submitting a question to the failed institutions. I wish I could get MJF out on my little fishing boat for an afternoon without his handlers to explain all this. [/QUOTE]

[Debi Brooks]

I've seen some references to "top of the pyramid" and "power structure" and I want to pick-up on that concept. One of the "truths" we experience in our active work with scientists (again, academics and industry; basic, translational and clinical) is that novel ideas can come from anywhere...also, that sound critique needs to be ferreted out and considered.

Bill Langston has said "it's ok for a scientist to sleep with his/her idea--they just can't marry it"...one thing I observe is that when we are in front of scientists, they often have "an" idea that does become the organizing principle for their life's work. So it can seem as though they aren't listening or contributing to other ideas (good and bad)...we need everything to be more dynamic...we need the bar to be high and the rigor to be consistent. We need sobriety and pragmatism to dance with passion and urgency. We need to persistently drive the question of patient relevance.

Importantly we aren't looking for one voice/idea that we can declare a winner. We need to evaluate and fund scores of ideas. In fact, since inception, MJFF has funded research on over 100 targets (our lingo for ideas/hypotheses) and allocated money for tools to advance targets. By definition (given what we know/don't know) we must hear many ideas.

I mention this because I believe this philosophy is at the core of the PDOR exercise. We can literally help scientists have scores of in-depth conversations. Again, not with the goal of driving the field to a single consensus for action but rather to percolate many points of consensus and support a portfolio of critical actions. Also, this system opens the scientific dialogue to be judged on merit and relevance. This resource can help refine the best ideas and maybe even solidify the case to take some ideas off the table. The goal is to facilitate a broader, high-level discussion -- it's a real opportunity to change the playing field for everyone's benefit.

Debi

[paula_w]

Debi your statement,

"Importantly we aren't looking for one voice/idea that we can declare a winner. We need to evaluate and fund scores of ideas. In fact, since inception, MJFF has funded research on over 100 targets (our lingo for ideas/hypotheses) and allocated money for tools to advance targets. By definition (given what we know/don't know) we must hear many ideas."

i agee is the most important concept to maintain. While concepts do need champions, open mindedness and flexibility are critical.

paula

[reverett123]

I think that the approach is a good one so long as you guard against the pressures of academic conformity. If top neurologists set the standard that squeezes out the young mavericks just out of school. Who would risk their careers promoting some fringe idea in that environment? But far more importantly, there needs to be input from disciplines other than neurology and the more the merrier. In particular, you need endocrinology and immunology represented. Heck, a good auto mechanic might spot something the others had missed.

But seriously, I admit to some disappointment mainly because I cannot swim in those waters. Of course I wish you well and we all benefit. Its just that organizations tend to ossify and I would hate for MJFF to join those ranks. Good luck.