Diabetes Social Media Summit 2010: my thoughts

Posted on July 3, 2010 by askmanny

Image map HTML code by: Bernard Farrell

It’s been less than a year since the first Diabetes Social Media Summit took place. A lot of water has passed under the bridge (not even sure if that phrase exists in English, but you get the idea!)

This year, the summit took place in Orlando, book-ended by the ADA Scientific Sessions and the Children With Diabetes Friends for Life conferences. Also, in 2010, the number attendees grew and type 2 diabetes was represented by more bloggers too (Betizuka, Rachel Baumgartel and Bob, among them).

Naturally, getting to see so many great DOC friends in person was the biggest highlight of the event. Some of them, I’d had the honor of meeting in person before. Several, I met for the first time. ALL, it was amazing to see together, because the amazing flow of ideas and passion that takes over the room when you get so many amazing diabetes advocates together in one room is hard to parallel. To give you a feel for the day in images, I embedded a slideshow below that pulls pics submitted by all attendees to a Flickr pool created by Bernard Farrell.

In case you are curious about what Roche presented to us (this probably took about 30 minutes out of a half a day that the summit lasted, to give you perspective), Scott Strumello uploaded the Powerpoint slides we got from them and I have embedded them below:

The high point in the agenda was the participation of ADA and AADE in the summit. ADA brought a representation that included the current ~~President, Richard Bergenstal~~ Chief Scientific & Medical Officer, David M. Kendall (thanks to Riva Greenberg for spotting my booboo ), a board member and representatives from communications, marketing and PR. ADA wanted to listen (they stated so in reply to an invitation from Roche to ask questions to the summit attendees) and I think the dialog that took place will be the starting point for lots of evolution in the way they interact with all diabetes patients in the coming months and years.

The tone of the exchange with AADE was different. We learned quite a bit from them, most importantly perhaps, that they are not the organization that is tasked with certifying diabetes educators. The attendees reiterated the commitment of the diabetes online community to support all efforts necessary to get more patients credentialed in order to support the increasing need for diabetes education in the US.

Dinner closed with a beautiful session where we exchanged best practices. The phrase that stuck with all of us came from Riva Greenberg:

BE BOLD!

So there you have it… my humble take on this year’s summit… because I know that a crowd of people can do so much more and so much better than a single individual, I recommend you mouse over the faces in the photo at the top. They are each linked to their corresponding blog or online community, so you can get a better rounded idea of what the Diabetes Social Media Summit was like this year.

Disclosure:

Roche paid for my travel, meals and hotel expenses in connection to the summit. I stayed longer in Orlando to attend the ADA Scientific Sessions 2010, but Roche paid no expenses related to the rest of my time in Central Florida.

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

Posted on May 24, 2010 by askmanny

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.

Viral Loop: From Facebook to Twitter, How Today's Smartest Businesses Grow Themselves

Posted on January 3, 2010 by askmanny

Great starting point to make sense of viral business growth

Adam Penenberg first entered my radar in 2008, when an interview he wrote about Gina Bianchini (co-founder of Ning, a platform that lets you create your own social network) was published in Fast Company. In it, he also interviewed Marc Andreessen and introduced the rest of us to viral loops, showing how Ning was growing virally by virtue of a “double viral loop”: every social network creator is a user and every user is a potential network creator. At the time of this review, there are nearly 2 million social networks on Ning.

Penenberg breaks down Viral Loop in three parts: Viral Businesses, Viral Marketing and Viral Network. In the first part, he walks the reader from the original viral models (Tupperware and Ponzi schemes); through a fascinating story of the first online expansion viral loop which led to the introduction of Andreessen’s Mosaic and, later, Netscape too; and wraps up with a detailed explanation of Ning, how it accomplishes its viral growth and the elements (technical and cultural) that make viral businesses possible.

The Viral Marketing part, shares stories of Hotmail and the Diet Coke-Mentos Geysers video among others, giving interesting insights into accomplishing viral growth through marketing. The Viral Networks part takes up almost half the book. It dedicates individual chapters to the most successful networks that grew virally: I only wish he had dedicated more space to discussing Twitter.

It was very interesting to read how initial stiff competition between PayPal and eBay (two of the companies covered) resulted in the latter buying the PayPal (dubbed as “the first stackable network” by Penenberg), after eBay attempted to go against them with their own flavor of the service. Viral Loop closes leaving the door open to the future, discussing the search for a new ad unit to adequately fit the new space of viral networks and privacy matters in this new era.

Although I felt there was a missed opportunity to discuss more in depth about the importance of interactions between users (there seemed to be more emphasis on just number of users alone), if you want to understand of how companies like Ning, Facebook and Paypal have grown virally, this is a great starting point. Another title I recommend in connection with this one is Sarah Lacy’s Once You’re Lucky, Twice You’re Good: The Rebirth of Silicon Valley and the Rise of Web 2.0, another great title that complements Penenberg’s book very nicely.