A Health 2.0 Overview, Through the Eyes of a New Diabetic
Last Monday I found out from my doctor that I have Diabetes (probably Type 1; I need more tests to confirm), which basically means high blood sugar. It was quite a surprise, as I have no family history of diabetes and it is relatively uncommon to get Type 1 diabetes in your 30's. However, I soon discovered that diabetes affects more than 240 million people worldwide. So it is something a lot of people have. Indeed, chances are you know of someone with it or you may even have it yourself. Because it is so widespread, there is a lot of web data, social networking options and even web apps that cater to people with diabetes.
In this post, I'm somewhat selfishly going to review the diabetes sites and apps I found across the Web. But this post also serves, I hope, as an introduction to the more general topic of 'Health 2.0' - a.k.a. healthcare that uses the Internet. Over the weekend, Frank Gruber posted an excellent round-up of health 2.0 resources on the Web. Frank pointed out that the big sites, like Web MD and HealthLine, are the resources most used. But there are a lot of newer sites and apps that offer a more modern, Web 2.0 approach. He also noted that both Microsoft and Google are making moves in health 2.0. For example see our story earlier this year on Microsoft acquiring MedStory.
Defining Health 2.0
As with Web 2.0, there is a lot of debate about the meaning of the term 'health 2.0'. According to the Health 2.0 conference blog, their definition "is currently focusing on user-generated aspects of Web2.0 within health care but not directly interacting with the mainstream health care system." This means things like search, communities, and tools. As yet Health 2.0 user-generated content has not been connnected to the wider health care system - which, according to the Health 2.0 conference organizers, hasn't even adopted Web 1.0 yet!
Search
The first thing you might do if you discover you have diabetes, is do some Web searches on it. In my case my doctor and specialist had already explained the basics of the condition to me: it is fairly easily managed, via testing your blood a few times a day and injecting insulin maybe a couple of times a day (it varies by person). Also you must drastically cut your sugar intake in food and drink, and exercise moderately. There is no cure at this point for diabetes, so this routine must be followed indefinitely. So I was told all that, but still I was curious to find out everything I could... so, to the Web search engines I went!
A Google search is where I started; and at the top of the first page of results is the Wikipedia definition. This is a very thorough and long page, explaining what diabetes is and pointing to over 50 external references. A lot of people still complain about the Wikipedia as a source of reliable information, but as a starting point on diabetes it is exemplary.
My next port of call was a specialist health search engine. Frank mentioned Healia in his post, a health search engine that gives you filtering options. In my tests, it didn't really throw up much new info that I needed. WebMD had better info, but it wasn't presented very attractively.
Healia
Another 'vertical search' option for health is Kosmix, which has a kind of search-portal for many different verticals - one of which is diabetes. Now this is more like it! There are guides, images, Q&A, videos, "trusted sources", news, a forum, and more - all very nicely presented and easy to access. Even the ads were relevant to diabetes. There are a lot of areas to explore in this portal from Kosmix, making it the best search resource I found on the subject. But it will depend on what you're looking for - in my case, variety and good presentation are key factors to help me explore this new condition I have.
Kosmix Health
For more info on health search engines, see of course our network blog AltSearchEngines. Editor Charles Knight wrote a post in June reviewing health search engines (including a list of them) - his conclusion was that WebMD was best, but he also recommended revolutionhealth , CognitionSearch , Healthline , among others. TauMed is another one I've come across that I like. Finally, check out the Great Debate on health search engines on ASE.
Health 2.0 Blogs
Search is all very well for finding information, but what if you're after a more personal connection - or social groups.
The Health 2.0 Blog is a great starting point for healthcare on the Internet. It's a community blog that started in November. There's also an accompanying wiki and Facebook group.
The Diabetes Mine blog is a more personal day-to-day reflections blog about diabetes, by Amy Tenderich. The most recent post is very relevant to me - it's about being diagnosed with Type 1 in your mid-30's!
Another great site for diabetics is dLife, an attractive portal of info and forum options. It recently launched an aggregator for diabetes blogs, Blogabetes [via ScienceRoll].
dLife
There are many more blogs related to health and technology - check out the blogrolls of the above sites, or a list such as this one.
Social Networks
So what can social networks provide for diabetics? As to be expected, there are a number of Facebook groups about Diabetes - over 500 of them in fact! The biggest is 'Find a Cure for Juvenile Diabetes', which has 5,470 members. I joined up to a few of these groups, but I wanted something more.
I eventually found Tu Diabetes, an online community for people with diabetes that was created in March 2007 by Manny Hernandez using Ning. Manny describes it as a place "where the members help each other out, educate ourselves and share the steps we take every day to stay healthy while living with this very serious condition." One person described Tu Diabetes as "like 'MySpace' on insulin"! The site recently reached 1,400 members and it is a great example of a niche social network, as the below introductory video from Manny explains:
Diabetes Web Apps
SugarStats is an app that allows you to track, monitor and share your blood sugar levels "and other key statistics" online. It is based out of Hawaii and was founded by Marston Alfred, who was diagnosed with Type 1 Diabetes over 15 years ago. Normally diabetics have a paper journal in which they log the blood tests we are required to carry out 3-4 times a day. SugarStats has potentially very useful aggregation, graphing and trending tools, plus you can share your stats with relatives or other diabetics. SugarStats also has a mobile version - even Twitter integration!! For more reasons why online diabetes tracking is better than the paper-based version, see this post on the SugarStats blog.
SugarStats
There is a free and premium version from $8.29 per month (with extra features such as Food/Carb Tracking & Graphs, and SSL security). I've signed up to the free version to try it out, but I can see myself upgrading if it works well for me. Overall, SugarStats is an excellent use of web 2.0 to enhance healthcare treatment.
Health 2.0 Events
Getting back to health 2.0 in general, in recent years health 2.0 conferences and events have sprung up. There was a BarCamp-like event called HealthCamp at the end of last year (no sign of a follow-up event though). The Health 2.0 Conference was held on September 20th, 2007 in San Francisco. There's some good coverage of this event on the Diabetes Mine blog.
The next Health 2.0 conference is 3-4 March, 2008 in San Diego, and the topic is "Connecting Consumers & Providers". For more information see www.health2con.com.
Conclusion
This is a pretty indulgent post really - basically I needed to do research into diabetes management for my own purposes, and I have blogged what I discovered. But beyond that, I hope this post gives you a good idea of what is available on the Web when it comes to healthcare.
There are a lot of people much worse off than me, both in terms of diabetes (it's much tougher for children to cope with) and other health problems that people endure. Also it's still early stages in "health 2.0" - i.e. for some the Web may be of little use. But the Web is increasingly enhancing healthcare - certainly it is very useful with a condition such as diabetes, which is common worldwide and is something that can be managed on a daily basis.
I'm sure I've missed some health 2.0 and/or diabetes resources, so please add in the comments. Also if you want to discuss how the Web has helped you (or not) with a health issue you've experienced, then feel free to leave a comment.
Top image: Diabetes Trophy, by PhotoPieces
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Hey thanks for the info, it will be helpful to a lof of people including me.
Posted by: Elf | November 26, 2007 8:32 PM
i immediately thought of today's post on diabetesmine when i read the first paragraph. while hardly web 2.0, diabeticmommy.com has a nice community as well. good luck with your sugars - consider using an insulin pump. my wife started using one when she got pregnant and her last a1c was 5.4!
Posted by: Ken | November 26, 2007 9:03 PM
You forgot to mention a big health 2.0 site www.hUSpital.com
Posted by: Caylin | November 26, 2007 9:29 PM
Thank u so mcuh for detailed infrmation! My grandmother is also suffering from diabetes... but its under control now ... she was continuously taking insulins.
i wud like to share this website where i found relevant list of doctors, who provide diabetes treatment !
http://www.clickindia.com/sports-health-beauty/
Posted by: Diabetes treatment | November 26, 2007 10:44 PM
Check out www.whoissick.org - its a good example of Health2.0. User generated sickness tracking on a Google Map mashup.
Posted by: Health guy | November 27, 2007 12:30 AM
Great post, thanks. I am currently planning an online diabetic community myself, probably UK focused as we really don't have much over here, if anything. If anyone is interested in being involved or has any suggestions drop me a line: dave@change2.org.
Thanks again for a great summary.
Posted by: Dave Briggs | November 27, 2007 2:29 AM
That must have been a shock to have been told that.
Did you get very ill beforehand that prompted you to go a doctor?
Ho Are you sure it's type 1 and not type 2 - you certainly want to find out ASAP?
Posted by: Security | November 27, 2007 3:28 AM
What a glad surprise to wake up today to see TuDiabetes mentioned in your post along with so many other great resources.
I am sorry about the Dx you received: I hope you find all the sites you mentioned useful in the process of embracing this new phase you are entering. It can be daunting at first, that is why TuDiabetes exists in part: to help you deal with it without feeling alone. Because, as you well pointed out: it's hardly a problem you only have. There's well over 240 million of us.
If you ever want to chat about anything diabetes, besides the site(s), you can always drop me a line to manny at tudiabetes DOT org.
Take care,
P.S. @ Dave Briggs, from the U.K. - you should def. check out TuDiabetes.com. We have a large number of our members from the U.K. After U.S. and Canada, is the third country from where we receive the most visits (about 2,000 per month by now).
Posted by: Manny Hernandez | November 27, 2007 3:40 AM
Hopefully helpful, and a little self-promotional.
Check out www.DiabetesControlForLife.com.
My team at Bridge Worldwide launched this diabetes management toolsite for one of our clients (Abbott Nutrition). It includes some nutritional/lifestyle tools, menu planners, fitness tools, basic diabetes info, etc...it actually helps people control their diabetes.
Hope this helps.
Posted by: bender | November 27, 2007 4:46 AM
Sorry to hear about your diagnosis. I have a kid brother who got Type 1 diabetes in his late 20s. He and I are the only two in our family with any form of diabetes. So it's not common, but not unheard of to get type 1 later in life.
In your search engines section you might like to add the Diabetes Search Engine that I've setup using Google custom search engine facilities. It's available at http://bernardfarrell.com/dse.html, or you can add it to your blog or page from here: http://tinyurl.com/287x3m.
I initially created it for myself, and I continue to add diabetes sites and blogs to it. I donate the (small) advertising revenue from it to diabetes research.
You may also be interested in the Diabetes Online Community list of diabetes blogs that's available at http://diabetesoc.blogspot.com/.
There's are several diabetes related groups on Yahoo!, including DiabetesCGMS (http://health.groups.yahoo.com/group/diabetescgms/) that's got lots of useful information on continuous glucose monitors.
Posted by: Bernard Farrell | November 27, 2007 5:54 AM
Hi Richard,
So sorry about your diagnosis. Thanks for the shout-out on my site. Let me know if there's any way I can help.
- AmyT
www.diabetesmine.com
Posted by: AmyT of www.diabetesmine.com | November 27, 2007 7:15 AM
Sorry to hear about your diagnosis of Type 1. Were you feeling sick and went to the Dr's and that's when they told you? I had a similar situation 5 or so years ago and I'm a Type2 now myself.
Well there's plenty of us here for support and info.
good luck man.
Posted by: Ken - Battle Diabetes blog | November 27, 2007 7:45 AM
Thanks for the shout-out for dLife!
As an editor and columnist for dLife.com, as well as a diabetes blogger at www.sixuntilme.com, I feel that the value of online diabetes support is tremendous. I've been living with type 1 diabetes since I was six years old, so I understand how much community matters.
All the best,
Kerri
www.sixuntilme.com
www.dlife.com
Posted by: Kerri. | November 27, 2007 8:35 AM
Sorry to hear about the diagnosis. I was diagnosed with Type 1 last year at the young age of 39. I found the community on TuDiabetes to to be very helpful. With the encouragement of many of the member on that site I was able to lower my A1C ( a test of blood glucose over several months ) from 7.2 to 6.5.
Posted by: Khurt Williams | November 27, 2007 10:23 AM
Richard,
Since you're newly diagnosed, I think you'll find the available information more than enough, perhaps a bit overwhelming. It's all about learning now. However, that stage soon passes, and eventually you'll pretty much know everything there is to know, it will come down to easily facilitating your daily monitoring, self-management and communicating with your physician.
This is the area where I am quite disappointed, having researched a lot of sites for my Dad last year.
My impression is that most monotoring/tracking sites are created by IT types, who probably are not diabetic patients themselves, or don't have one in the family.
An extreme example: Microsoft's HealthVault, which is so complex that you really have to be a hacker/geek type to even navigate it eventually lands me at a site where I can enter glucose results but can't even label them as fasting, after breakfast ..etc. Utter nonsense, they clearly have no clue about diabetes!
Other sites are not this bad, but they typically don't provide enough charting options, don't calculate the right averages ..etc. Worst of all: they don't think of the reality of just how much time your physician can spend with you: i.e. requiring the physician to register with the service, sign-in every time to see your results .etc. Think of how many different sites the doc would have to sign in to. What most is these services miss is providing a simple overview print /pdf to be emailed or shown to the doc.
I think the sites not done by "IT Only" types but diabetic patients or their famiily/friends are better, at least they are painfully aware of the daily routine. On the other hand, thse sites may be limited by the creator's bery personal experience and are not catering for a wide range of patients.
Sugartats is a very good example. I think it will serve you very well, bing a Type I yo need to record multiple measurements a day, it also helps recording your meal intake, exercise, etc. It totally fails my Dad, who is a type II, only needs to check his glucose level 1-2 days a week, perfected his diet to the point he no longer needs to bother about it: the Sugartats graphs are totally unreadable, they assume you use them every day, end drop to zero level any day data is missing. After looking at dozens of services (including the one at #8 above, just now), I haven't found one that works for the very simple task of recording his data, defining what to chart and calculate certain averages. I ended up doing my own custom Zoho Sheet and emailing the URL to his doc periodically.
Btw, the same goes for blood pressure tracking, which, again, should be a very simple task.
Posted by: Zoli Erdos | November 27, 2007 10:43 AM
Thanks all for the comments -- some interesting new resources to check out, and nice feeling of community already.
To answer a couple of the questions, yes I was feeling unwell and that prompted a visit to my GP, who took blood tests, and that determined it was diabetes. It is probably type 1, but there are more tests to do to confirm.
Posted by: Richard MacManus | November 27, 2007 12:24 PM
In August, Adaptive Path showed the world it's vision for easier diabetes maintenance. In response to Amy Tendrich's call for iPod quality design applied to medical devices, AP designed a concept for a product we nicknamed "Charmr". The response to the work has been overwhelming.
http://www.adaptivepath.com/charmr
Posted by: Dan Harrelson | November 27, 2007 2:05 PM
I have found a lot of good info for people with diabetes at another blog called GI News (ginews.blogspot.com). They discuss myths here, have recipes etc.
Posted by: studio34 | November 27, 2007 3:14 PM
Great post, Richard, but your initial comment re: "probably Type 1" is worrying. You really should find out the type for sure.
Posted by: Steve Mink | November 27, 2007 3:36 PM
Good luck in getting private insurance in the future. You will most likely be denied.
Good luck in you or your spouse getting a job in a big company, they will find someone more qualified after they see your risk.
My wife has the same condition when she was pregnant 23 years ago. Only when she is pregnant. Despite the fact that she is too old to get pregnant now and had her tube ties. No-one will insure her. For a while I could get insurance for her, but it was $3,000 a month. Thanks, BCBS of TN.
You have a good chance of being the 35 million who cannot get insurance in the USA. Sorry for the extra bad news.
Posted by: John | November 27, 2007 3:38 PM
Another good site to help keeping track of your blood sugars is www.trackmysugars.com.
Posted by: Michael | November 27, 2007 4:10 PM
thanks for the info man, I was also just diagnosed Type 1 in March and im in my 20's so I know the shock. Some great sites!! Cheers
Posted by: Andreas | November 27, 2007 4:44 PM
You can ask a doctor a question about diabetes over at MedHelp.org:
Adult Type II:
http://www.medhelp.org/forums/show/161
Type I (manned by the JDRF juvenile diabetes research foundation docs):
http://www.medhelp.org/forums/diabetes/index.htm
and an unmoderated patient-to-patient forum:
http://www.medhelp.org/forums/Diabetes-Support/wwwboard.html
I'm a practicing physician who answers questions there as an employee of MedHelp
Posted by: Enoch Choi | November 27, 2007 6:29 PM
As the bills and insurance claims, etc. begin to pile in you may want to have a look at MedBillManager to help you keep track of everything.
Posted by: Matt | November 27, 2007 7:33 PM
#20, John, Richard may just find that New Zealand, where he lives has a better health system than what we're stuck with in the US...
Posted by: Zoli Erdos | November 27, 2007 9:09 PM
Sorry to hear, Richard. I was 23, and even that is considered rare. You are very unlucky. Get ready to listen to a lot of misinformed/good-intentioned people.
Posted by: Robert | November 28, 2007 4:10 AM
You fail to mention some information that is actually helpful.
Type 2 diabetes is completely and easily curable through diet alone. Type 1 diabetes is caused by cow's milk protein, is not curable, but much can be done to control it through diet. See the work of Joel Fuhrman, MD and John McDougall, MD.
Posted by: bp | November 28, 2007 6:37 AM
This is definitely a great list of places to go on the internet for information and support for diabetes. It's really a great community out here!
Also, in regards to the above poster: Type 1 diabetes is NOT caused by cow's milk protein. I'm not sure where you got that ridiculous idea. Type 1 diabetes is caused by the body attacking its own insulin-producing cells. All the websites mentioned above will tell you that.
Posted by: Amalas | November 28, 2007 7:16 AM
Another resource -- Dailystrength.org has online support groups for Diabetes I and II. It's a social networking site focused on health.
Posted by: Craig Cochrane | November 28, 2007 9:00 AM
My favorite uncle and my mother both succumbed
to diabetes just after it affected their feet.
My uncle died piece by piece via foot and leg
amputations of both legs.
My uncle in the 60's and my mother in the 90's.
I have it as well and because of this I too
started a blog/website all about feet and is
becoming very popular.
In addition to foot related injuries it covers
the diabetic foot as well, with numerous pictures
and explanations about diabetes and how it affects
the feet.
Your article AND blog are excellent. Keep up the
outstanding work.
The Footologist Recommends...
Larry Parsons
Posted by: The Footologist Recommends | November 28, 2007 2:09 PM
Always remember that all the information on the internet is not always accurate. Not only a Certified Diabetes Educator, I have diabetes myself, but most importantly I am the mother of 2 type 1's. I have found out in living with diabetes for over 20 years that so information can also harm you. Again, also resouce you materials and find out who is offering the information.
Posted by: Terry Jennings, RN, CDE | November 28, 2007 2:18 PM
Terry, I completely agree. Just to clarify, this post wasn't meant to be - nor did it purport to be - an objective list of info and sites relating to diabetes. I have only just been diagnosed with it, so I am by no means an expert. This post was an exploration of what is out there on the Web and my experiences researching it.
Comment #27 is indeed ridiculous. I made the mistake of clicking thru to the digg page yesterday for this post and read two similarly insulting and unintelligent comments - one even had the audacity (a.k.a. idiocy) to suggest they knew more about my diagnosis than my doctors! So there are lots of people out there who haven't read this post in its true context and presume to think they know more about me than my doctors.
I am glad to see though that almost all the comments here on this post are intelligent and helpful! :-)
Posted by: Richard MacManus | November 28, 2007 6:01 PM
You might find some good folks/info at www.diabetic-talk.org IRC chatroom. They were quite helpful to me.
Now that's Old School!
Posted by: John Norris | November 29, 2007 9:16 AM
MayoClinic.com is also an good source of health information.
http://mayoclinic.com/health/type-1-diabetes/DS00329/DSECTION=1
Posted by: Scott | November 29, 2007 11:54 AM
Hey there, I was also diagnosed with type 1 in my 20's and started scheduled chats with medical professionals and leaders in the field of diabetes so they could talk to my members.
www.diabetestalkfest.com
~ Good luck, Gina
Posted by: Gina | November 29, 2007 7:30 PM
I have to attest that there is a tremendous community in the online diabetes world, as you can see from the comments above.
Though its a bummer to hear you were just diagnosed, I know you'll find some great support and information (as you have in this post).
As others have said keep a good eye on and watch your diet ( Know Type 2's who have completely removed themselves from medication after going on a Natural Raw Foods diet and hear about it more daily. You should check out the Raw for 30 days movie trailer, its also being reviewed for Sun Dance).
Being a Type 1 for 15 years myself, in the past month I've gone on a 60% (will be moving towards 100%) Raw food diet and have had to reduce my insulin by more than 50% because my glucose stabilized tremendously.
And as you might know be now keeping tracking your stats is very important as well (thanks for the SugarStats mention BTW).
Best of luck with everything Richard!
--
Be Well,
Marston A, SugarStats
Posted by: Marston A, SugarStats | November 29, 2007 9:40 PM
Richard, back in the day I used to be the principal blogger for WIN's healthcare blogs, specifically the diabetes, heart and cancer blogs. Fortunately, I had none of those conditions, but did have a real heart for people who did.
That's also where I met Amy Tenderich, and became her biggest fan. So far as I can tell, she is the leading voice on the subject. Take her up on her offer to help. You'll be glad you did.
Posted by: Paul Chaney | December 3, 2007 7:23 PM
Might want to have a look at this:
http://tinyurl.com/2mta59
80/10/10 Diet, discusses diabetes and a simple solution.
Posted by: Carolyn Oliveira | December 11, 2007 11:51 AM