PD think tank-input requested
 

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.

more to think about
 

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!

Thanks, Jean. Looks like a good start.

PD ring/blog
 

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

Don't overlook PDOR
 

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

patient-centered blog ring?
 

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! :rolleyes: 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

Debi
 

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

how about this?
 

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?

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

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.

Rick -

the blog could be set up with several levels of authority or participation. There could be more than one administrator, who would have complete access, then there could be authors who could submit their own entries, etc. To comment you'd have to register, and the comments would be moderated by whoever authored that particular entry.

I wouldn't want to reinvent the wheel, so if, for instance, you would write an entry it could link to your blog. But there might be those who don't already have a blog that could use this as their platform.

The main thing is that it would be a place for serious, thoughtful, and well researched information on Parkinson's from the patient point of view.

We are going ahead with the Alpha site.

You need a Ning.
 

If I may make the suggestion of a 'ning'? It's the best of all social networking all rolled into one site: it seamlessly integrates a social forum around a central focus or interest with individual member profiles and blogs- private messaging is also a part of the design. I'd say the only element it really lacks is a wiki. This is how it works- see how this might work for the Think Tank:

Teacher-Librarian Ning

I belong to that professional ning and can say that I love it!

I think this would serve all functions that you may need and may even anticipate some future needs, Rick. It works as a forum much like NeuroTalk with threaded discussions where each user has his or her own private profile page with blogging and pm capabilities. Images, videos, and files can be uploaded and shared. Live events can be scheduled and Subgroups can be formed. Rick, you would be the administrator, but I believe you can share that duty with others as needed.

BTW, It all runs on Java- a commom PHP (Bulletin Board or Forum platform) and is available free of charge or as a pay service.

Finally, what criteria are you setting for members to share their knowledge of various research areas or pet theories? Just wondering...I have a bit of theory backed by research but am not sure it's up to your standard at this point. However, one of the exciting aspects of a ning is that other PWP members may start reading what I'm sharing and think 'hey, that clicks with me too' and start adding to the thought pool backing it up with better research- I think in this way, we could definitely mirror the PDOR site but with a layperson patient level of expertise and bounce ideas off each other.

Anyway, if you need any more Ning info, please let me know, and I will get some further info from my librarian colleagues.

Best,

Laura

ning is amazing!!!
 

Laura what an amazing place!!!

The ning is very impressive. Carrey, take a look and if it works for you. As to standards, administration, etc my thoughts are a standard of citing sources for facts but a free hand for speculation from there with a steady stream of feedback from other members. In fact, that group critique would be essential if we are to be more than individuals with their opinions. I would expect the contents of my blog, for example, to be under my control so long as I met the citation requirement. But the comments of my fellow ningers would be independent peer review in real time even though part of my blog. That could prove very powerful.

The ning is a slick piece of work and shouts legitimacy. That's important if we are to be taken seriously. It should also be relatively easy to attract media attention once the time is right. And it would seem to be made to order for the WPC poster section coming up. I like it.

The Ning does offer wiki access.
 

Carey, the Ning concept or framework may work for Alpha as well.

I notice the Ning does indeed provide Wiki access to its members, so I think this seals it as being almost complete on the social network tool scene (it doesn't, thank goodness, Twitter or Tweet or make any other bird nattering noises). I don't know how many of you have used a wiki before but it is a powerful tool for collaboration on a common goal - I'm not sure about opening it to all members right away, but I honestly think that the PDOR interface could benefit from having a Wiki like structure to their interactive inquiry approach - I find it difficult and sometimes circular to follow comments at that site whereas in a wiki things can be tiered and organized into a main menu system with separate page links- must be my librarian brain trying to classify everything at PDOR and I just can't get a handle on it. :p

Laura

I'm not so sure about the ning option now that I have fiddled wth it a little. I set up a dummy called "Parkinson's Collaboration" as a test. Try it out if you wish at www.parkinsonscollaboration.ning.com - the first problem is that the name is too long. But the more serious one is being dependent on the "ning.com" domain. It makes me feel constrained knowing that Big Pharma could get rid of me simply by buying up ning. OK, so I'm paranoid.

It is still pretty slick but it is kind of "one size fits none" once I get into it. I think I can copy some of their approach and do better.

So, how about this. I have my website (www.parkinsonsonline.org) through Siteground. (It doesn't necessarily have to be through my site nor Siteground, it is just that those are what I am famliar with).

Siteground will let me host multiple blogs for starters. So anyone who does not have their own could be on WordPress in ten minutes. Mine is at http://parkinsonsonline.org/blog1/

Siteground will also let me have a forum structure similar to vBulletin. I have one at http://www.parkinsonsonline.org/forum1/

There is a hidden wiki at http://www.parkinsonsonline.org/Park...itle=Main_Page

In short, there are a lot more possible options.

Unclear
 

Rick,


I must have not been entirely clear on your goals for the site- the Bulletin Board format will work fine if you mainly want an umbrella site.

This is entirely your baby, so your choice. A Ning, I think, is still the ideal choice if you want a dynamic, collaborative environment. Keep in mind, you do have the option of purchasing a domain that differs from ning.com- see this FAQ- this is a fee that could even be shared among members of the Ning.

educause.edu/ir/library/pdf/ELI7036.pdf

-Laura