Hello Dr Agar,
The art of getting the information ‘out there’ especially in these days of hyper-overload on information is not an easy one. Especially as with this website; it’s for specialist viewing for want of a better phrase. There are ways that the site owners can get the site listed higher on the web browsers under search phraseology but I’ll leave that to the techies as I’m sure they have a much better understanding than a mere mortal such as me.
I am not so far down the treatment line as to be on dialysis (as you know from a previous communication with your good self) but I have been given a folder of information form my renal team. To be quite frank there was a lot of information in it (including 2 DVDs) but it was not the type of information that I would want to seek at this time, so in essence it was not really of much value.
Just stepping aside for now (and I tend to do that a lot) once my team started to talk about dialysis in earnest one of the first place I looked was here on the internet. The UK does have some sites that are either run by the NHS or are from trained specialists such as your self. The NHS site’s information does not describe the variety of dialysis available to the patients in any great detail and the more detailed sites were like reading another language to me. So persevere I did and stumbled across this site. It has much more information and the sort of information that I would like (although build up to Dialysis information is still scant) and beyond what I would need to know at this stage.
However armed with information from this site it has helped me more or less confirm the type of treatment I would like in the future when the time comes and I am now confident that I could put up a solid argument as to why as well.
Here is the link to Lister Hospital, Stevenage which would be my local centre http://www.renal.org/unit/?c=stevenage . As you can see it’s not really very helpful nor giving the information I would seek. This by the way is typical of the renal units’ information in England as the information is supplied by the NHS, one size doesn’t fit all. (Last up dated December 2008 ergh!).
So getting back on track this is a very informative site that is both useful and constructive. In the information pack I received there was no mention of t this site so at the right time I shall get my renal team to have a look and add it to the pack so that others will have the opportunity to use it too. It maybe therefore worth reviewing who and what are your targets are and at what stage the site is introduced to the patients. Perhaps getting in at an earlier stage of the treatment journey would be a consideration. I am also sure that throughout the world there are specialist forums and meetings (such as Seattle) where this site could be promoted in the conference/information guides, that would also promote and not-for-profit site such as this that is run by experts and users alike. That’s where you, your fellow specialists and their teams could (as I’m sure you do) make that difference to the pool of potential users.
I would say that you (collectively) are doing a great job in running the site and getting the information out there. Especially you Dr Agar as sometimes you nearly write a book on each answer (not a bad thing mind you it’s always very thorough) and with the general Forum its very informative and appropriate. From a personal perspective I have learned much and have more to learn. This will always be my first port of call and I shall spread the word.
Wishing you all the best of health,
Shaymon