Comments on: What Do You Want From a Health Site / Community?

By: Kevin

Kevin — Fri, 24 Aug 2007 17:31:31 +0000

What about the 2,164 diabetes related yahoogroups & ChildrenWithDiabetes as examples, too? I was surprised not to see these on your initial list.

Lots of people belong to multiple groups and that’s the beauty of the Internet. Also by the time you build the perfect site, the aura of that community will likely change and you’ll be off to the next one.

Ultimately, keeping it simple and allowing people to get what they need without forcing them to sit for hours in front of a PC is very important, especially for people with diabetes.

By: Fard Johnmar

Fard Johnmar — Fri, 24 Aug 2007 14:58:37 +0000

Amy:

Great post. I think that Laurie is on to something here. Based on what I know about how people use info online, having a place where people can get information from “official” and “unofficial” sources would be really great. What I’m also looking for is for more government agencies and major non-profits to understand the benefits of having good citizen and medical expert content in the same place. Revolution Health, WebMD, ADA and JDRF have all figured that out, but I’m looking for more to join them. Also, see you in SF!

By: Laurie

Laurie — Fri, 24 Aug 2007 13:56:46 +0000

Web MD has a "community" site as well at: http://www.webmd.com/community I like the combination of information that is research based and people's "stories" as told by the individual. These stories are what people living with diabetes can relate to and feel that, "I'm not alone" feeling that is important.

By: Allison

Allison — Thu, 23 Aug 2007 16:50:28 +0000

Jens: Although I love blogs (I must, since I’ve been writing one for over two years), I understand where you’re coming from. My father actually said the same thing to me in a discussion we had once. He just doesn’t understand the value in listening to someone on their soapbox. He’d rather have facts than opinion. I personally like to have both, and I think a lot of people do too. I recommend JDRF.org for their research updates. Community is a low-priority for them, but it’s still there via their Chapter websites. Just a thought – don’t know if you’re a T1 or T2.

As for the Six Until Me title, the phrase is from the diabetes’ point of view. Kerri was six when she was diagnosed – so it was “six” years “until” the “me” (diabetes) arrived. Kinda confusing, I know, and it’s not explained on the site very well, but that’s the story!

By: Jens Olafson

Jens Olafson — Thu, 23 Aug 2007 06:18:44 +0000

I’ll try it one more time, then I’ll shut up.
==a site that isn’t graphics intensive, so low-bandwidth users aren’t stuck in cyber space.
==a site that is more factual than opinion/rant/complaint.
==a site that gives me current research findings that have a bearing on the way I live with my diabetes.
==a site that has options for those who desire “community” but doesn’t make that the focal point.
==a site that deals with the realities of self-care in the US world of poor health care, insurance, MDs who, apart from endos, seem remarkably ignorant of what diabetes care entails.
Oh no. Getting my opinions and rants in there. I guess I need to start my own blog.

By: AmyT

AmyT — Thu, 23 Aug 2007 02:11:01 +0000

Thanks, Jens. Since you said none of the sites are quite what you’re after, what is it you’re after? Or will you just know it when you see it?

By: Jens Olafson

Jens Olafson — Thu, 23 Aug 2007 00:52:41 +0000

Uh. Sorry Amy. I thought I was responding to your request for information about what your readers wanted/liked/disliked on internet sites re: diabetes and other health matters.
Read it again: what I do want is there. What we’re getting is critiqued.
What exactly are you wanting to hear?

By: Felix Kasza

Felix Kasza — Wed, 22 Aug 2007 23:19:33 +0000

I read blogs for entertainment. Research I do off-line, in textbooks and magazines (PubMed is my friend, after that, it’s off to the university library). For focused information on treatment, emedicine often helps.

I prefer to stay away from sites like WebMD which label anything that is not obviously a steak or a banana a “medicine”.

Cheers,
Felix.

By: AmyT

AmyT — Wed, 22 Aug 2007 22:32:09 +0000

Hmm, Jens, I think there was a compliment in there somewhere. So thanks.

Everybody else: I’d love to hear what you DO want, in addition to what you don’t.

By: Jens Olafson

Jens Olafson — Wed, 22 Aug 2007 22:21:23 +0000

I live in a rural area, and have s-l-o-w internet access. So when thing that weeds out sites I won’t ever visit again is high-graphics and/or video/flash movies.
I simply don’t have bandwidth or time to waste on waiting for fancy graphics to load or to sit through a 3 minute Utube video that takes half hour or so to download.
I like sites that are general enough to have something I can use: either think about or do. I don’t like to read a lot of woe is me stuff, but recognize that we all have our bad days/weeks/months/years with diabetes.
I don’t feel any great need to lay out my 40+ years of T1 diabetes; I do appreciate the stories from spouses, because I know it’s been a difficult journey for my wife.
I cringe at the bad science sites, i.e. those that collect all sorts of weird theories about diabetes care.
I tried tudiabetes; didn’t stick around. I read a couple of forums, for pumpers mostly, and have received helpful input.
I read you, Amy, a couple times a week. I’ve tried “six until me,” even though the title itself is either narcissistic or inexplicable–or both? but don’t think I’ll stay with that site much longer.
I like diatribe, but it seems to be lagging a bit in publication: check it weekly and it’s still what was there a month ago it seems.
I guess I’m saying a “blog” isn’t quite what I need. Reading someone’s random meanderings doesn’t quite add up to compelling. Neither is the ADA site. a community site has its pluses and minuses, writer’s ego and ignorance heading the minus list.
So what’s a guy to do?
I scan a variety of sites, none are quite what I’m after.
I think that’s the blessing and the curse of the internet: a half mile wide and a quarter inch deep.
I’d prefer a few yards/meters wide and a couple of yards/meters deep.