Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Power to the People!

In this day and age of globalisation and increased connectivity through developments in communication technologies such as the internet, the world is indeed becoming a smaller and smaller place.

With these developments come opportunities. Perfect examples include websites such as youtube, myspace, ebay and ofcourse kickas. Never before have people been able to interact as they can today with practically anyone in the world.

The purpose of this post is twofold:

1. To suggest ways in which kickas could be further developed to make an even bigger difference than it already does for countless numbers of people suffering from AS.

2. Suggest ways in which you can contribute to spreading awareness of this condition and make a difference in how AS is perceived by those around us, and in the long run even accelerate the process of finding a cure for this disease (yeah right I hear you say). Stay with me!

In business there is a term known as "clustering". A business cluster is the geographic concentration of interconnected businesses, suppliers, and associated institutions in a particular field. Clusters have the potential to affect competition by increasing productivity, driving innovation in the field, and stimulating new business. The beauty of the internet is that it removes the notion of geographic concentration, and that it allows entities to cluster regardless of their proximity to each other.

Let me put it in context.

KickAs now has nearly 5000 active members. The difference between KickAs and other networking sites such as myspace or hi5 is that every member has a profound reason for being here. Now imagine what would happen if we could somehow develop a website with discussion boards not only for sufferers of AS, but also for rheumatologists, medical researchers, and dare I say it, even drug companies. If you could create an environment, a space where all these parties could interact, can you see how this would be beneficial not only to our cause, but also those of the specialists and the drug companies? A researcher in the UK needs 50 subjects to participate in a drug trial. One post on the website, and chances are he would have his subjects the next day. A drug company needs specialists to assist in the development of a new product - same thing happens. A project of this nature would need to be very carefully thought through, but I am convinced that if it is handled in the right way, and developed in a manner that the experts would benefit, we would be onto something. It's better for us, better for them - everybody wins!

How can you make a difference? Well, you already are, simply by being a member of kickas and contributing to the forums. I was recently surfing the net and came across the Myspace AS support group ( http://groups.myspace.com/ankylosingspondylitiss ). While this site is still in its infancy, it is starting to gain a following and the discussion board is slowly gaining momentum. Join their group, and any other group that you can find online!

Networking is the key. Alone we are weak, together, be it with 2 or 20,000 people, we are significantly stronger with a much higher probability of being heard.

Spread the word - power to the people!

Bro.

what would happen if we could somehow develop a website with discussion boards not only for sufferers of AS, but also for rheumatologists, medical researchers, and dare I say it, even drug companies.

What is to stop rheumies and researchers posting now if they were really interested in a dialogue with patients? KickAS is successful because it is run by patients, which is probably why they don't!

I think it's a great idea!

It's true that rheumies and drug companies could peruse the site as it is now, but is that really practical? Does a busy rheumy really have time to sift through posts about personal events like a vacation or the birth of a baby?

Mind you, I'm not saying those events aren't interesting and important. It's part of the social network, sharing and caring which make this site what it is. Nevertheless, to get doctors to look at posts, they'd have to be much more succinct and targeted to information which would be important to a doctor, like the efficacy of a particular pain med or what helps people with AS to sleep better, or how an aquatic program benefited someone.

Areas of the site for health care practitioners and other professionals would have to be targeted to their needs and interests or they are not going to bother looking.

Karen

Agreed Bilko, there is nothing to stop them from engaging the kickas community as it is now. I find it curious that I have not seen a single expert get involved here. You would think this site would be a gold mine for their work!

With regards to the recommendations for the kickas website: as I have said, this would have to be handled very delicately. While it would be great to get involvement from the experts, you would want to do it in such a way that it wouldn't adversely affect the intimate dynamic that has been fostered in this site over the years. Perhaps it might be a better idea to develop something like this completely separate from kickas altogether, and have the two sites interact in a complimentary manner.

It is just an idea, and ideas are great, but remain nothing more until they are executed. I put it forward to all of you - would this perhaps be something that some people here might be willing to take on as a group bonding exercise? There must be several web developers and intelligent people in the community who would be in a position to set something like this up.

Bro

Am getting round to responding to this - gonna take me a while though. Food for thought - but, inponderables...! (Like, 'wouldn't it be luvelee' but...!!)

Molly
(diggin thunks)

You haven't seen a single expert get involved here, eh?

Which type of experts would that be, the ones without the disease who pontificate about what it must be like to have it, or the ones without the bad effects from the pharmaceutical drugs they so glibly proscribe?

No thank you, I'm not interested in participating in a "group bonding exercise" to encourage people to subject themselves to being guinea pigs for the pharmaceutical companies. KickAs has credibility precisely because it is a non profit site.

I knew this sort of thing was going to show up the second Holly said we were now linked to that orphan diseases site which also is, in reality, a lobbying group for Big Pharma companies. I researched a lot of their shenanigans before this last election we just had, and now I'm hearing radio ads touting themselves as being Really Really Nice because they don't want their sweetheart deal with the Administration mucked with and they're afraid of this political shift in Congress. MySpace my A$$. Gaaaaaaaah.

Point taken wind rider. Perhaps a "group bonding exercise" was a wrong choice of words. I never mentioned anything about profit did I? If you are going to involve outside parties especially the likes of drug companies then there are inevitably going to be some elements of commercialism involved which is why I proposed developing something like this outside of kickas. I can understand and appreciate your skepticism, but at the same time this stance will make no difference - for better or worse.

Bro.

Who says that Rheumys Dr's and drug companys are not already watching this site?? There are always anonomus people on the site....I have given this link to my Rheumotologist, my GP and my Remecade people and I am sure most others have aswell.
Dan

The use of researchers needing subjects and pharmaceutical companies requiring specialists were just the most obvious and direct examples that came to mind when I was trying to demonstrate how a website of this nature might be beneficial. I think the real benefits would lie in the creation of a knowledge space which would be the result of the new channels of multi-lateral communication between patients, specialists and pharmaceutical companies.

And IF there are specialists of the medical kind lurking out there, would it not be great if they made their presence known? Are they afraid that they would have 5000 people sending them emails??? I don't get it.

Bro.