Diabetes Social Media Summit: my thoughts

(if you don't recognize a face, I included a legend at the bottom of this post)

Few times does one get the opportunity that 29 people with diabetes had Wednesday and Thursday this week. So I am thankful for having been a part of the group that had this opportunity: the 29 people in the photo above participated in a Diabetes Social Media Summit organized by Roche at their Indianapolis US headquarters. For taking this bold step, thanks to Roche. And for helping it become a reality, thanks to Amy Tenderich.

Wed. July 22, 2009
We flew in from all over the US to Indianapolis and the first encounter in the lobby of the hotel was as special as can be. Since Kelly Close and I flew in last from the Bay Area, there were a few folks only left waiting there, but it was incredible to see them... If you haven't met in person others with diabetes, you don't know what you are missing! And when the people you are meeting are some of the people you love and admire the most from the diabetes web, it's hard to top!

After getting ready, we then headed to a local restaurant where the rest of the attendees were mingling. The head of sales @ Roche served as the event's host and he described it as a "7th Grade Party" where boys and girls would sit in opposite sides of the room, trying to overcome the fear to approach the other group... probably a fair way to describe how some participants felt ("cautious care" I think were the words someone used) towards being in the same room with Pharma in an event put together by Pharma.

However, the room was buzzing with excitement. People meeting in person, cameras flashing ("come take a picture with me!")... FINALLY talking each other directly instead of through the comment box on their blogs... you get the idea! The food was good and the chat continued in the bar of the lobby.

Eventually, a group of us headed back to one of the rooms and the most special thing happened. Folks started taking turns, going around the room and sharing their story. But the night was too short for everyone to be able to speak beyond the version of their life that we may know through their blog. The next day gave us a chance to continue to know each other some more in spite of being split into tables.

Thu. July 23, 2009
We started by going around the meeting room, with everyone getting up, saying their name, site name and twitter account, when and why they got into social media and what they expected from the event.

Then, we had a session that I had the honor of opening, to try to define what is it that we are doing and ways in which we can do more of it... we are all passionate about diabetes, about the people that live with it and have a determination to help them through our work and our words: some are for profit, some are nonprofit and some are doing it for the fun of it, but deep within us, we want to make a difference in people's lives.

We estimated we are reaching somewhere between 500,000 and a little over 1 million people with diabetes, but all agreed that the task ahead is still phenomenal when you consider the numbers: 25 million people with diabetes in the US and 250 million worldwide. As one of the tables put it, "95% of the people with diabetes are disenfranchised." We also agreed that a majority of the folks we were reaching were people with type 1 diabetes, whereas (as we know) the majority of the patients live with type 2 diabetes.

So the groups got to work and came back with goals and tactics to try to address this. Three main themes emerged at the end of the session:
1) There is a need for a change in the way diabetes is portrayed, to change the diabetes message. It's not all smiles and perfection: it's not like the meter ads with a happy "100" or "104" on the display at all times, but rather a one-day-at-a-time fight.
2) There is need for access to information about sites like these. Opportunities to get the word out present themselves through health fairs, health care professionals (those that see the importance of patient communities and patient blogs), patient PR and even when people receive kits upon first getting diagnosed, to tell them about the multitude of web sites where they can obtain support and information from other people living with diabetes.
3) There is a need to coordinate efforts so we can grow the space that all sites share, so that all groups can collaborate more effectively. Coordinating efforts will lead to improved ways to find information and resources that are better suited to each person's needs, instead of having each group or blogger reinvent things that someone else may already be doing.

After lunch, Amy led a session focused on the discussion about ways to get Pharma to participate in the social media space: do's and don'ts... it was a candid conversation where everyone was very open about their feelings towards the things that Pharma does and the things that it doesn't (and should) do.

Things got a bit tense towards the end of the event, when questions were made about the profits made by Pharma over test strips. Clearly the cost of strips (and managing diabetes to stay healthy) is a VERY critical issue when you consider that living in a country like the US where having a chronic disease means you cannot get insurance or, if you get it (through your job), you are forced to make professional decisions out of the NEED for coverage. This only gets worse when you live in a third world country, as we've pointed out in this video.

I am hopeful that one of the suggestions made yesterday (by Scott King), to offer some kind of insurance or significant discount on test strips to uninsured patients is picked up and made a reality. The impact on the health and lives of millions of people with diabetes would be HUGE! Let's keep our eyes open.

I think we all took some great lessons back home:
* The representatives from Roche who were with us certainly had plenty they heard from us. The things we love and expect and the things we hate.
* We all learned a little more about each other: when there were only a handful of us the night of our arrival in room 966 of the hotel and when we were in the plenary sessions or during the meals.
* We all realized we have a lot more in common than we thought: there are certainly different approaches to what we are doing. Some blogs focus on diabetes technology while others choose to write about their life with diabetes or simply validate diabetes through humor. Some communities focus on women while others focus on children. Some emphasize creativity as a way to connect while others call for a joint fight. But at the end of the day, we all share the same passion and commitment.

Was the group complete? By no means... the diabetes social media space has so many more incredible people contributing that were missed, but it is my hope that this week's event laid the groundwork to make this kind of summit a regular occurrence that is part of a bigger thing, where diabetes bloggers and diabetes community leaders from all over the social web can join in to help grow the number of people touched by diabetes we are reaching and positively impact their lives with diabetes.


In the photo above:
1) Riva Greenberg
2) Ginger Vieira
3) Kelly Kunik
4) Fran Carpentier
5) Crystal Lane (a.k.a. Calpumper)
6) Kitty Castellini
7) Sandra Miller
8) Christel Marchand
9) David Edelman
10) Brandy Barnes
11) Bennet Dunlap
12) Lee Ann Thill
13) Allison Blass
14) Gina Capone
15) Jeff Hitchcock
16) Kerri Morrone
17) Manny Hernandez
18) Chris Bishop
19) Amy Tenderich
20) Kelly Close
21) Christopher Thomas
22) Scott King
23) Bernard Farrell
24) Scott Strumello
25) George Simmons
26) Scott Johnson
27) William Lee Dubois
28) David Mendosa
29) Charlie Cherry