Cool new front page Dori, Brian, et al.
Check it out http://www.homedialysis.org/
Thanks, Bill! I was going to wait & see if folks noticed! Next step is to get some navigation onto the message board pages so people can see that there is more to the site than just the boards (much as we love 'em).
I just noticed it, it looks just like the post card!! Good combination of cool blue color in that background with the warm colors in the front. The red Nav headings did its justice… Overall, very well done.
Now some makeup is needed on the messageboard…hehe
I agree, Gus. We’d like to make the message board colors match, too.
Looks great!!!
Keep up the great work.
Pat
Hi y’all,
Okay, so the new & improved Home Dialysis Central has been available for a couple of months & you’ve had a chance to use it. What do you think? Are you able to find things you’re looking for more easily? Are there other new features we should look into?
[quote=Dori Schatell;13333]Hi y’all,
Okay, so the new & improved Home Dialysis Central has been available for a couple of months & you’ve had a chance to use it. What do you think? Are you able to find things you’re looking for more easily? Are there other new features we should look into?[/quote]
Looks and works great! That’s enough for me… 
For the most part the forum has been working with like a breeze!
Nice!
I don’t know what the old one was like, but I love this one!
[QUOTE=Dori Schatell;13333]Hi y’all,
Okay, so the new & improved Home Dialysis Central has been available for a couple of months & you’ve had a chance to use it. What do you think? Are you able to find things you’re looking for more easily? Are there other new features we should look into?[/QUOTE]
Site has a nice look. As far as new features to look into, as I’ve stated in the past, I would love an “Ask the Experts” feature.I have always felt this is so needed as otherwise one has to ask and ask and ask to get questions answered. AND, very often, info from patient to patient.is not fully accurate. Don’t get me wrong- I will take info from anyone, will check it out thorougly and use what is accurate. And patients have a unique perspective of first hand experience. But I have found when I speak with a true, professional expert, it gives me more insight.
Also, I’d like to see something similar to the Kidney School concept regarding a how to on how to do optimal txs at home- an educational look at what makes up optimal dialysis and how exactly txs should be done. I realize there are different machines for home txs, but there are only a few and I think it would be very doable to have an online course of sorts on how each machine operates and what home patients need to know to perform their own, optimal txs. I think more patients would want to do home txs if it didn’t seem so difficult and mysterious.There is much info on what home dialysis is, but not enough on how its done.
And one last feature I’d like to see is more bottom-line info. By that I mean, personally, the subject of dialysis doesn’t interest me very much- not that it’s not an interesting topic, but there are a million other things I’d rather be doing. I get sick of hearing about it lol! Dialysis is part of my life, but it’s not my whole life! I would love info/ articles etc that get to the point- good ,solid info that tells me what I need to do to manage my disease and txs which doesn’t dominate all my time to read and understand. Like I could enjoy a section entitled “The 100 Most Important Things to Know About Your Dialysis Tx” or how about “Dialysis for Dummies” ? You know, anything to condense things and creatively make dialysis education practical…
Hah Dialysis for Dummies I love that!
Also good would be “101 ways not to stuff up your buttonholes”, “how to stay sane sitting on your bum for 5 hours in centre”, “how to get nurses to pay more attention to you” and "how to make sure you don’t forgot your emergency procedures’!!
Cheers
Thanks for the suggestions & great comments, y’all. Jane, have you checked out our “Topic of the Month” articles? They’re 3-4 pages on a certain topic (like why more hemo is better) and might be the sort of focused info you’re looking for. You can find those under “Useful Reading” from the home page.
I’m intrigued by your machine detail idea & will have to kick that around some (or, if you can elaborate on it, that would be great).
[QUOTE=Dori Schatell;13346]Thanks for the suggestions & great comments, y’all. Jane, have you checked out our “Topic of the Month” articles? They’re 3-4 pages on a certain topic (like why more hemo is better) and might be the sort of focused info you’re looking for. You can find those under “Useful Reading” from the home page.
I’m intrigued by your machine detail idea & will have to kick that around some (or, if you can elaborate on it, that would be great).[/QUOTE]
Yes Dori, I have read the articles mentioned and they are always a source of good info. But what I’m saying is, I would like to see a course of some type which brings all the basic info patients need to optimaly address their disease and it’s tx into one course. Anotherwards, instead of having to ask a million questions to put together what to do because there are few experts to clearly educate us, go all over the net searching for answers, read endless articles and texts, go to seminars etc., I’d like to see one comprehensive course that explains what kidney disease is, specific, all-inclusive, accurate info we need to address each aspect of the disease and full instructions on what equipment /techniques are needed to run an optimal tx.
Now that I’ve done txs at home, I know how easy it is to do- a 10 year old child could run a tx if trained adequately! I am also able to see how much nursing staff skip and/or fail to do correctly. Living well on dialysis is a two part thing- knowing how to accurately address each aspect of the disease and running optimal txs. And a 3rd component would be, doing the latter expediciously, so that one can go on with the business of living a productive life. This is why I believe an accurate, focused course is essential. After one is lauunced into knowledgeable txs, if he wants to expand his knowledge, fine. But I believe patients need a soild foundation, first- one they do not have to search all over for, but is delivered clearly to them.
Oh! That’s what Kidney School (one of our other sites: http://www.kidneyschool.org was meant to be. It covers everything from kidneys to diet to anemia to coping to sexuality in 16 modules…but it doesn’t get into how to run the machine(s). Each manufacturer would have to share training information with us, and I don’t know that they’d do that (though we haven’t asked).
It’s interesting that you mention wanting comprehensive information. Most of what I see out there in terms of patient education is tri-fold brochures or very short pieces, on the belief that “patients don’t want to be overwhelmed.” I’ve heard staff say, “just give them what they need to know–no more than a paragraph.” But whenever we’ve done research with patients, we hear more like what you say-- “I need to know everything.” And that’s the basis on which we did Kidney School. All told, it’s probably 250 pages or so of information.
Dori,
When KS first came out, I skimmed through one or two sections. I have had it on my list of things to revisit. How long has it been available? Looks like a number of experts contributed? Did you get patient input before writing it? I find that true experts are very inciteful as to patients’ most important needs for education. Anotherwards, patients need info from various angles that are not apparent to the average professional. So many times, professionals have assumed I wanted to know something or thought something would help me in the education process, that was not my need at all. So, in my study, I like information that captures the real issues of a dialysis patient and that can even vary from patient to patient. I also like info that goes deep enough without getting too overly technical. It’s a real achievment to put out just the right balance of info. First chance I get, I would like to read several sections of KS to see if I think it has the balance I appreciate. Do you add to or revise the sections? I didn’t notice-is there a section on bone health?
The first module of Kidney School went “live” in 2001, and the last one (which will include bone health) isn’t done yet–but hopefully this year. We always have patient input before (and after) we write anything, both through research and througn ongoing contacts in forums like this one and dialysis_support. (I’ve monitored 3 patient listservs since 1997). We also had patients pre-test Kidney School, and we’ve gotten evaluations from thousands of users–who are overwhelmingly happy with it.
Give it a try!