What Do You Want From a Health Site / Community?

Oh, how the health-related websites proliferate. They’re popping up faster than frozen yogurt shops in the 1980′s. At least a dozen new health-focused search engines and patient community sites have graciously contacted me in recent weeks asking for feedback on their functionality and patient karma. Sadly, I haven’t been able to do them all justice.

Community_online Which makes me think they can’t possibly all survive. I’m guessing that most of you are as busy as I am. At some point, we’ll all wheedle our online activities down to a handful of health-related sites that feel like home.

So what exactly determines which of these “houses” feel like “homes”? Credibility, high-quality content, and friendly interface design are givens, of course. But what else are we really looking for? A place that is exclusively devoted to our own condition (for us PWDs, dLife, Talkfest, or TuDiabetes.com)? Or are we interested in spending time on the diabetes pages of a broader health network like HealthCentral.com or Revolution Health?

Seeing as I’ll be hosting a panel on “Social Media for Patients” at the upcoming Health 2.0 Conference in San Francisco – which explores the convergence of the Health Boom and Web 2.0 — I’d like to hear your thoughts on the topic.

So tell me, Dear Target Audience (that’s how they see you):

- What makes a patient community site work for you?

- Do you want to post “your story” in detail, or read a multitude of bloggers on a single medical site?

- Are you interested in a search engine where a real live medical expert “walks you through” your research?

- Or are you doing just fine with the Google/WebMD combo?

- What makes any health/medical site bookmark-worthy for you?

- And/or what would you like to ask (or tell) the country’s top web-health luminaries if you could?

Not familiar with any of the current offerings? Check out a few of these before you answer:

Health Community Sites:
iVillage

Revolution Health

HeathCare Your Way

HopeCube.com

Patients Like Me

DailyStrength.org

HealthCentralNetwork

CarePlace.com

Organized Wisdom

OurHeatlhCircle (from UC Berkeley)

MyDocHub.com

Health-Related Search Engines:

WebMD

Healia.com

RehaTool.com

MedHelp International (also with community forums)

HealthFind.com

HealthLine.com

Kosmix

Epocrates MedSearch

Coming Soon:

iMedix.com

** UPDATE: Check out Hospital Impact’s posts on Healthcare for the Facebook Generation (why do we need to build NEW sites for health stuff?) and Is RevolutionHealth’s Revolution Dead? (user fatigue – you try out a new site, but do you go back?). Excellent points, both. **

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15 Responses

  1. Tom W.
    Tom W. August 22, 2007 at 8:35 am | | Reply

    I think all of these sites have an important place in the diabetes ecosystem. Personally, though, I prefer to spend most of my time in a friendly community. I think there’s more of a personal touch in a place like Diabetes Daily (http://www.diabetesdaily.com/forum/) and Tu Diabetes (http://www.tudiabetes.com). They feel less corporate and tend to have more helpful people (just my experience).

    That said, Health Central has some fantastic bloggers like David Mendosa. There’s a lot of content there that’s worth reading.

    I guess I think that “mom and pop” forums can provide a great filter. You have hundreds of people with diabetes that read all of these sites and can post links to the stuff that’s worth your time to read. Just my $.02!

  2. Scott
    Scott August 22, 2007 at 8:52 am | | Reply

    You hit on the important elements, Amy … as far as high-quality content and friendly interface design.

    Having a large, active community goes a long way, too. But a site is likely to fail if it attempts to bulldoze already-established online communities; which can trigger a backlash. Consider the difference between the DiabetesOC, an organic community, and the Diabetes Blog Network. The latter remains out there today, but was seen as trying to buy its way and steamroll the DiabetesOC, which emerged victorious as uninfluenced by corporate greed.

    Another important item is a point of differentiation. For example, one reason why DiabetesTalkFest (DTF) and TuDiabetes have emerged is they are run by people living with diabetes themselves, not some anonymous organization or company one whose goal is to sell advertising. That gives them more credibility than some other sites. But these 2 sites have survived side-by-side because they differ from one another in important ways: DTF is differentiated mainly by its chatroom and history of hosting diabetes luminaries in its chatroom, while TuDiabetes is slightly larger but more international in its approach.

    Another key is how the site manages advertising. Poorly screened ads promising miracle cures for diabetes being mass-emailed will instantly destroy any hope of credibility a site hopes to have, but ads that are carefully screened and disclose themselves as advertising are not viewed as big negatives.

  3. Elizabeth
    Elizabeth August 22, 2007 at 9:12 am | | Reply

    Amy-
    I am not sure if you know or not, but David and I created http://www.searchandcure.com which is a search engine that donates 100% of its profits to diabetes research. It’s works just like google but with a better cause, we think. It is certainly worth mentioning. Thanks!

  4. joan
    joan August 22, 2007 at 11:24 am | | Reply

    Amy, your blog is the only diabetes one I read on a daily basis. My favorite blogs are the ones in which you write about your personal experience with diabetes. Even though it is written with your usual sense of humor, I can relate to the frustration I read between the lines (and sometimes its not between the lines but very overt! LOL). So I guess for me being able to relate to the blog information is the most important thing. Like so many other of your bloggers, I have limited time to explore the websites but I always look forward to reading diabetesmin.com

  5. Jens Olafson
    Jens Olafson August 22, 2007 at 3:21 pm | | Reply

    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.

  6. AmyT
    AmyT August 22, 2007 at 3:32 pm | | Reply

    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.

  7. Felix Kasza
    Felix Kasza August 22, 2007 at 4:19 pm | | Reply

    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.

  8. Jens Olafson
    Jens Olafson August 22, 2007 at 5:52 pm | | Reply

    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?

  9. AmyT
    AmyT August 22, 2007 at 7:11 pm | | Reply

    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?

  10. Jens Olafson
    Jens Olafson August 22, 2007 at 11:18 pm | | Reply

    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.

  11. Allison
    Allison August 23, 2007 at 9:50 am | | Reply

    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!

  12. Laurie
    Laurie August 24, 2007 at 6:56 am | | Reply

    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.

  13. Fard Johnmar
    Fard Johnmar August 24, 2007 at 7:58 am | | Reply

    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!

  14. Kevin
    Kevin August 24, 2007 at 10:31 am | | Reply

    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.

  15. Dwinur
    Dwinur July 15, 2011 at 2:53 pm | | Reply

    True this really, really easy but sometimes people find difficulty with it. I like his example. thank you very much sir for the information

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