[reverett123]

I am thinking about something that will take some work and that may already exist somewhere. If it does, then I don't want to waste the work reinventing the wheel. So, I thought that I would try to describe it and ask if anyone knows of such a group already doing it.

While all of us are interested in PD, some of us burrow in quite deeply. We become scholars of the subject but often have areas of ignorance that weaken us. We also tend to have our own pet theories which can cause us to overlook valuable information. And, when we do finally give up, our work drifts away into cyberspace and is lost.

I've been toying with the idea of a blog ring of such folks. Each of us in his own tower grinding his particular axe but also reading and adding comments to the others in the ring. If done right that should build in a sort of self-correcting mechanism since the other ring members could point out things overlooked, etc. It would also foster an "aha" effect where pieces of the puzzle one member had worked out might suddenly click into place with those of another member.

Can anyone point me to such a critter? Or someone who is running a blog that might be interested in such an approach? Thanks.

[jeanb]

Rick,

I did a few searches and this link describes how to create a blog ring.

http://www.squidoo.com/blogring#module9113259

Or instead of "just" a blog ring, how about a "social networking ring" that incorporates links to and from blogs, websites, youtubes, facebook sites, podcasts, databases, and ...?

just more things to think about!

[reverett123]

Thanks, Jean. Looks like a good start.

[olsen]

Hi Rick, found this site recently. It does not look very active, though might be close to the concept you put forth: (be aware this site is sponsored by "inventiv health care company)
http://www.parkinsonsblognetwork.com/default.aspx

[Debi Brooks]

When MJFF launched PDOR www.pdonlineresearch.org, it was with just this type of exchanges in mind ... we could see the value of such exchanges of pre-published information that took place in our extensive interactions in face-to-face meetings with small groups of scientists (academic, industry and clinical) in our reviews / assessments / funding strategy sessions. Our hope and belief was that we could / should find a way to broaden the experience beyond people in the room. The intent is not to drive the field to consensus but rather make room for multiple points of concensus on key challenges with the hopes of illuminating key areas for continued investigation.

The site has been up for about six months and admittedly, its still an experiment--we don't know if we can drive sufficient traffic to get the site at a critical mass of investigators to truly have an impact. This kind of cross-talk is near non-existent within science. By the way, there are many outcomes of PDOR that would make it a success in our mind.

* Elevating and expanding discourse to new pockets of relevant research
* Identifying new targets
* Attracking new investigators to PD work
* Avoiding unnecessary duplication of effort / wasted research dollars
* Facilitate access to potential collaborators

While membership (ie, one can do a blog entry) is limited to scientists and grant makers, the entire site is open to the public. So, patients and caregivers can follow threads of interest as well. Some members of Neurotalk are also members of PDOR.

Anyway, just wanted to be sure folks were aware that MJFF is behind such an effort.

Happy Holidays,

Debi Brooks

[jeanb]

Thanks, Debi,

We love the pdonlineresearch site, but very few of us on this Board can post on it. In the context of this discussion, I would imagine if there is a blog ring (or whatever ) set up for patients, certainly that entire site or specific topics would be mentioned or discussed or linked to as a resource.

Rick, I don't mean to speak out of turn! please - correct me if I am off track ( it's your vision) ! If you PM me, maybe we can come up with a plan. And I'd be happy to help set it up.

best,
jean

[reverett123]

Debi-
I would love to work from a platform with the attention-getting power of MJFF, but, unless I am missing something, there still is no provision for lay research. It is no surprise, I am sure, that I see that as a mistake.

There is an advantage to my position as such a researcher in that I am free to ask "stupid" questions, take controversial positions, cross the boundaries between disciplines, work free of the constraints of tenure or career or funding, challenge orthodoxy, etc.

I have no doubt that I make mistakes that a "real" scientist would roll his eyes at, but that reflects a misinterpretation of my self-assigned role. I am trying to be just short of outlandish because that is an important position and a "real" researcher can't do it because he lacks those freedoms.

Einstein said, "Imagination is more important than knowledge." That is what a lay researcher can offer.

Any chronic disease in this wired age has a subgroup of patients who turn to the Net and many of them become true experts on their particular disorder. What I envision, whether solo or with MJFF or Ali or whoever, is a small group of such PWP, each with his own autonomous blog, organized into a "ring" where they put their ideas on the table for their fellows to consider and comment upon. Ideally, it would prove to be a fertile and self-correcting source of ideas that "real" researchers could run with.

There are many advantages to this approach. It overcomes the problem of communication between science and patient, for example. I know that a researcher does not have time to educate me in the basics. That would make me a liability. However, if I have taken the time to tackle that learning curve on my own and then set to self-publishing my thoughts via a blog, then things shift a little.

What I hope to put together is an autonomous, self-regulating group that is by invitation only and whose members base their work on peer reviewed publications. If you have not done so, stop by my own blog to see what I have in mind on the individual level. A Matter of Balance

[indigogo]

Rick - the Alpha horse has not yet been beaten to death; it is merely a temporary victim of other things going on.

you said:
What I hope to put together is an autonomous, self-regulating group that is by invitation only and whose members base their work on peer reviewed publications.

I am in the process of doing exactly what you are suggesting; setting up a blog site using WordPress Thesis that will be available for multiple authors with moderated comments. Not only research topics based on peer reviewed research, but also articles/entries written and researched by PWP on the pharma industry and health care.

I would have done is sooner, but Thesis, which is much easier to manipulate than other WordPress free blogs because you don't need to know html, costs $87, and I haven't been able to buy it yet. But the idea is for one site with multiple authors with their own blog entries.

Would that work?

[paula_w]

http://participatorymedicine.org/
http://e-patients.net/

Who’s Involved?

The Society’s Board of Directors

Alan Greene, MD, President
Cheryl Greene
Dan Hoch, MD
Danny Z. Sands, MD, Co-Chair
Dave deBronkart (e-Patient Dave), Co-Chair
Gilles Frydman, Vice President
Joe Graedon
John Grohol, PsyD, Treasurer
John Lester
Jon Lebkowsky
Sarah Greene
Teresa Graedon, Secretary

Read the rest of this entry »
http://jopm.org/index.php/jpm/index

Dan Hoch, a neurologist who now runs braintalk has invited the book group to write for the journal, [no guarantee of pub lishing until peer reiviewed and asked if others in the forum would be interested.

paula

[reverett123]

Carey and Jean-
Sounds like a starting point. I'm still new at this so I'm just fumbling forward, but it sounds good. I will read up on it butam not familiar with Thesis. I assume that it gives one a central administration role. Anything else?

One thing that I had considered is that most blogs that would take part would be pre-existing and have their own look with an emtional investment by their owner. If Thesis requires that they abandon that work, there could be problems.