Tag Archives: tudiabetes

THIS is how a low blood sugar feels!

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darkness. is it? wait, no. am i? am i?
am i awake? am i? am i gonna die?
dumb tongue, tongue dumb. must wake. must wake.
my hhhand, my hhhand is shhhake, is shhhake
ing. gaah, lift my life up, out of this bed
confused, yep, check. and check, my aching head.
get fed, get fed, don’t trip, don’t slip, don’t fall
bed, floor, table, door, open drawer, race into the hall.
she sees me and knows a maniac is on the loose,
in the kitchen, 3am, doublefisting orange juice.

–
A poem by Felix, a member of TuDiabetes.org, read July 24, 2010 during the first “No-Sugar Added Poetry” book party held at Philz Coffee in Berkeley, CA.

Get a copy of No-Sugar Added Poetry and help the Diabetes Hands Foundation.

Diabetes Hands Foundation as a networked nonprofit

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Networked Nonprofit, image from Beth Kanter

Beth Kanter’s most recent book, The Networked Nonprofit, co-written by Allison Fine, points out social media tools integral to nonprofits fall into three general categories of use:

  • Conversation starters
  • Collaboration tools
  • Network builders

In this post, I share examples of how the Diabetes Hands Foundation, behaves as a networked nonprofit and ways in which we can become more networked as well.

Conversation starters
Conversation starters are a natural part of our day to day. We run two social networks on Ning for people touched by diabetes: TuDiabetes in English and EsTuDiabetes en español.

On the networks, people seek for support and information, posting fairly specific questions like “What do I do to cover my diabetes supplies now that my COBRA is about to expire?” Or they may conduct informal surveys like “What is your favorite way to handle a low blood sugar episode?”

We’ve learned that open-ended questions in general elicit the largest number of comments and replies, while the more specific questions typically generate fairly useful and targeted answers, though perhaps not as many as a “survey” kind of post.

The lessons we’ve learned we’ve incorporated into other channels such as Twitter and our Facebook page and seen comparable results, when we’ve initiated new conversations.

Collaboration tools and crowdsourcing
A good example of collaborative work and crowdsourcing the Diabetes Hands Foundation has conducted is TuAnalyze, launched in mid-May 2010.

TuAnalyze is diabetes data-mapping app running on TuDiabetes. Almost 1,100 members of the network have signed up for TuAnalyze so far, close to the 1:10:100 rule of user-generated content, considering the network has more than 15,000 registered members.

Participants enter their hemoglobin A1c data, a reflection of their average blood sugar level for the past three months. Once a minimum number of data points have been entered in a particular area, the area lights up on the map getting colored according to the average A1c value. The data collected also informs research at Children’s Hospital Boston, a nonprofit with whom we collaborated for the development of the application.

Another example of crowdsourcing at DHF is the No-Sugar Added Poetry book, available July 2010. This diabetes poetry book is the result of poems submitted by TuDiabetes members in early 2009. We conducted a contest during which we judged poems submitted based on a series of attributes and gave prizes to the winning submissions. We got a sponsor for the book (Roche Diagnostics Corporation), secured permissions to publish the poems and identified a publisher for the project. I plan to share more about the lessons we learned throughout this project soon.

Network builders
Having run two diabetes social networks since 2007, we understand how important it is for people to connect with one another in meaningful ways. This is indeed part of our mission (“To connect people touched by diabetes and raise diabetes awareness.”)

In 2009, we confirmed it is equally important for diabetes social media leaders and advocates to connect between them. A summit that gathered several people in this category inspired Diabetes Advocates, a new program we launched in early 2010.

The premise behind the Diabetes Advocates program is simple: to leverage the power of networked resources in a co-op fashion, introducing members of the program (bloggers as well as organizations) to new audiences and constituents through diabetes conferences and media outreach. These offline channels that are normally outside our individual reach become accessible and affordable when you pull a network together.

Another example of network building we’ve developed in Diabetes Hands Foundation is the HealthSeeker Facebook game we launched in mid-June 2010. The game gives rewards for simple tasks such as eating brown rice or going for a walk. In the game, the players’ Facebook friends become a source of support and encouragement to help them adopt healthy lifestyle changes.

Becoming a more networked nonprofit
Is the Diabetes Hands Foundation the best example of a networked nonprofit? Hardly. We need to keep on listening, engaging and building relationships along the way. We also have to improve how we leverage social media specifically in two fronts: fundraising and governance.

I hope this post may inspire you to make your nonprofit more networked and I look forward to your thoughts and suggestions.

IF YOU FOUND THIS POST USEFUL, PLEASE CONSIDER MAKING A TAX-DEDUCTIBLE DONATION TO THE DIABETES HANDS FOUNDATION.

Introducing TuAnalyze: Why Mapping Diabetes Data Matters

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This is a copy of the guest post I wrote for DiabetesMine.com, the diabetes blog by Amy Tenderich.

As some of you may have heard, TuDiabetes.org has partnered with Children’s Hospital Boston to develop an innovative new A1C mapping tool called TuAnalyze with support from the US Centers for Disease Control and Prevention (CDC). TuAnalyze was officially launched on the TuDiabetes site last Wednesday.

The application enables members to submit their Hemoglobin A1C data. The information submitted gets displayed in a community map on TuDiabetes, with states lighting up according to the aggregate A1C data once a threshold of participants in each state is reached. As of this writing, only California (verify this before posting) had lit up, but whatever the colors, we hope to light up the entire US map by the end of May!





We plan to explore additional metrics in the future, and move beyond the United States to map data from around the world collected through TuAnalyze.

But, beyond the cool effect: What’s the point of mapping diabetes data?

  • In the short term, the application certainly offers you a convenient place to track your own A1C data. Is this something you can do elsewhere? Absolutely. But…
  • Once the states start to light up, you can also see how your own numbers stack up against other people entering their A1C in your own state. You can view the total number of entries for the state, plus the average, low and high values and how the data entered are spread throughout the spectrum.
  • Also, as pointed out by Ginger Vieira from Diabeteens, “it’s hard to feel alone… when you can look at a map lit up with A1Cs of all kinds and ranges across the entire country!”

In the mid-to-long-term, as we start discovering correlations and learning from the data, there could be valuable things for us all to learn. Just as clinical studies can indicate the connection between the intake of this or that food or medication and changes in one or more biometrics for people with diabetes, we expect similar useful studies to result from the analysis of data collected through TuAnalyze.

We could also identify, for example, trends or a correlation between people’s participation in health-related social networks and their level of diabetes management. This is where the benefits of the application begin to transcend helping individuals into paths that may inform public health endeavors and research.

Are there possible negative implications from self-reported data?

Of course, all data sources have flaws. With TuAnalyze, we seek to complement the strengths of other data sources (CDC, NIH) while supplementing the weaknesses they may have. We also want to learn about participation and selection biases (what makes people be more inclined to enter their diabetes data vs. not doing it?).

We also hope to understand whether and how the research process itself can be accelerated through apps like TuAnalyze, helping reduce costs, complexity and cutting time.

Where does the TuAnalyze data get stored and how is it handled?

  • Members of the TuDiabetes social network contribute their data safely and anonymously via TuAnalyze, a highly secure application developed by researchers in the Children’s Hospital Informatics Program and based on the Indivo Personally Controlled Health Record. Indivo is currently in use as a personal health platform by the Children’s Hospital Boston along with the member companies of the Dossia consortium.
  • Through your “sharing settings” in the TuAnalyze application you select how much information about your A1C values to share – if any.
  • You may choose to have your data used for research purposes, unidentified and anonymous; have your A1C values grouped with the values of other users and made available for academic research, online charts, graphs and maps displayed on TuDiabetes; or make your data visible to whomever can see your TuDiabetes profile page.




Going back to my first conversations about the need for better diabetes data reporting with the Children’s Hospital Boston team in August 2008, I can only be proud of the carefully thought-out path we’ve traveled since then, to bring us to this new tool today. Where will this lead us? I don’t know for sure, but it is my firm belief that TuAnalyze will significantly aid the Diabetic Community to build a shared knowledge that’s bigger than any one of us.

I want to thank Amy Tenderich for the opportunity to guest write on her prestigious blog. I also want to thank the Children’s team, in particular Dr. Kenneth D. Mandl, Elissa R. Weitzman and Ben Adida — without their leadership and determination, this project would not been possible.

Social Media and Community: not either or

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From luc legay

Maybe no more than a year or two ago, I used to think of Twitter and Facebook as ways to drive traffic to our “main” online communities: TuDiabetes and EsTuDiabetes. The hope was that we could reach out to people interested in what we had to offer in either community on these other growing social networks and try to get them to visit and sign up as members…

Time passed and we realized that was happening, but not to the extent that we were hoping. While some people would visit and sign up for our social networks, something else that was VERY interesting was going on. If we shared a link to an interesting discussion going on in, say, TuDiabetes and included the title of the discussion on our Diabetes Hands Foundation Facebook page, if the topic was interesting, the discussion didn’t depart the page. Fans (or “likers“, I guess, would be the new term) on the page would engage in discussion DIRECTLY on the page and not leave Facebook at all.

Think of it: the convenience! You simply have to monitor one site (or few sites, maybe), keeping an eye on your main feed, and relevant elements are presented to you, on which you can jump and participate commenting about them, liking them or sharing them with others. It’s simple… and it’s brilliant!

Something similar happens on Twitter, though perhaps not in a way that is as easy to visualize because Twitter is less structured.

So, next time you are wondering whether your community should live on a space separate from Facebook and Twitter or be a part of these growing spaces, don’t think either or: you may already have a community going on in two or all three places.

Just Talking with @iam_spartacus

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Last week I chatted for a little over an hour with Christopher (a.k.a. @iam_spartacus) for his podcast Just Talking. It was an amazingly fun conversation as it always is with friends from the Diabetes Online Community (a.k.a. DOC). :)

You can listen to the show, download the MP3 or subscribe to Just Talking on iTunes.

Thanks so much for the fun time and the opportunity to share a little bit of what we are doing at the Diabetes Hands Foundation and TuDiabetes.

3 lessons in 3 years

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Recently TuDiabetes.org turned 3. To those that have stuck around since then and put up with my unending talk about the community (and its Spanish-speaking counterpart, EsTuDiabetes), receive my thanks! To those that stopped being my friends on Facebook, I don’t blame you: I know I have being a pest at times! :)

As a way to give back, I wanted to share 3 lessons I have learned about running a nonprofit diabetes social network in the past 3 years:

  1. Running a social network is not easy. Even having a solid platform like Ning at hand, the real work of running a social network comes where the rubber meats the road, i.e. when conflict arise… and conflict WILL arise. We’ve seen it even in a place that you wouldn’t expect to be conflict-prone: in a social network of people touched by diabetes, WHY would people argue or fight? The answer: throw politics or religion at the most civilized group of individuals and stand back. We may have things in common, but many times we let the things that separate us get in the way.
  2. Running a nonprofit is not easy either. I definitely wish I had known about options like having a Fiscal Sponsor early on (I know tell everyone that asks me for advice and even some people that don’t ask me for it -consider Fiscal Sponsorship as an option before you take the 501(c)3 plunge), so that we could have explored that option. We learned a lot in the process of applying for the tax-exempt status at the Diabetes Hands Foundation, but we also learned that it’s not the only way in which you can do good in a nonprofit context.
  3. Helping others is the best thing you can do in your life. You may be wondering, if running a social network (which is at the core of what we do) and running a nonprofit (which is the umbrella under which we live every day) aren’t easy things to do, why do we keep on doing it? Because the joy of seeing people discover they are not alone; the lessons people can take with them to improve their diabetes management, health and life; the result of seeing empowered patients who used to feel isolated before is PRICELESS!

Here is a video that touches on all three things. We posted it on TuDiabetes in 2009, after several weeks of an ongoing internal conflict in connection to type 1 diabetes vs. type 2 diabetes (which is worst)… the whole conflict led to this, which is where I stand today in regards to managing community and connecting people touched by diabetes, so we can all help each other out more than we can by having each of us stand on our own.

The best World Diabetes Day ever!!

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These are photos from last night’s World Diabetes Day event at the Ferry Building here in San Francisco. After an amazing Big Blue Test in the course of the day, the event lighting up the building in blue with a great attendance by about 50-some people touched by diabetes really made yesterday the best World Diabetes Day ever!


Find more photos like this on TuDiabetes – A Community for People Touched by Diabetes