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.

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

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.

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.

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.

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