I think I'm the last person to write-up about this meeting so consider this a short recap.
Roche Diagnostics organized this meetup with help from Amy Tenderich and Manny Hernandez. Roche paid all of our expenses to and from the meeting and put us up in a comfortable hotel. I know that going into this summit I was nervous because I really didn't know what to expect. One concern we all shared was whether Roche was going to use the summit to do a big sales job to us. In the end, we all learned from the experience and Roche did an excellent job focusing on social media, and how to engage with it, while keeping marketing away.
We arrived at our hotel on Wednesday evening and had a dinner hosted by Roche at a local restaurant. Each table had 2-3 bloggers and a corresponding number of Roche staff. Despite this, and I know I wasn't alone, we had an opportunity to talk with Roche people about a number of topics including, in my case, the Disetronic insulin pump (aka Accu-chek Spirit) and when it might be available again in the US. At some stage I'd like to review it, hopefully I will have that opportunity.
After a late night talking with each other, we were up early (and not so bright) for a 7:30 trip to Roche offices. Manny Hernandez led us in an exercise where we tried to think about how to increase our outreach to people with diabetes. The 500,000 to 1 million (estimated) people that read our collective blogs already know we exist, but what about the millions of people who are struggling with diabetes without much support except from office visits 2 - 4 times a year.
Some ideas that I liked:
Provide information to doctors offices with a list of qualified online resources that can help people with diabetes. (Gina Capone's excellentDiabetes OC is a great reference site if you're trying to get information about diabetes.)
Form a loose association of blogs and try to focus on a single topic once every few months. We could issue a press release to media around this event and spread awareness of a specific diabetes issue. Eventually media might pay attention to this reliable source for diabetes information and news.
In the afternoon we focused on social media and how to best engage pharma in our world. Here we're all really interested in a relationship that will benefit all of us. We need better information and products; pharma would like to increase awareness of their offerings and get more market share. Getting this right is a delicate balance and I'm sure mistakes will be made. I think Roche wanted to try and learn from our experiences so they don't screw up too much. Of course the problem here is that there aren't really any rules about how to use social media effectively and sometimes we all screw up. But we learn quickly!
I think Roche showed a lot of courage in organizing this first-time event. We bloggers benefited because we had a chance to build stronger connections. I hope that some of the very direct feedback we gave Roche will help them as they try to improve their message for folks with diabetes. (Hint: don't use stock photos, show real people with diabetes in realistic situations: carb counting; testing while exercising; correcting a low; etc.)
Our smiling faces are below, if you click on it you'll get to a page with a link to each blogger. If you want more information about the summit, each of them has provided a slightly different take on it.
In the last week I've read two different sources on social networking (AKA health 2.0). Together they beg the question: will your health improve if you use social networking to become part of a larger community?
What is social networking?
According to the Health 2.0 blog, it's "the use of social software and light-weight tools to promote collaboration between patients, their caregivers, medical professionals, and other stakeholders in health".
For me, this means sites like TuDiabetes.com, DiabetesDaily.com, and others. It also means using Twitter to keep in touch, or even sharing photographs (see Diabetes365) with friends who can help you maintain better health.
The first source was an article in Business Week magazine Health 2.0: Patients as Partners talks mostly about PatientsLikeMe and how members there are sharing details on their medical conditions to try and determine better ways of treating them. It points out
PatientsLikeMe and a proliferation of similar startups are building a new business predicated on the belief that the wisdom of crowds of patients will bring insights, solace, and most of all, power.
Power because, as it turns out, patients talking among themselves on a global scale with complete transparency produces all kinds of unexpected results. Drug side effects can be reported to regulators by the patients experiencing them, without waiting for the manufacturers to come forward. Pharmaceutical companies can use social networks to recruit subjects quickly for clinical trials, speeding up the pace of research. For that matter, patients can simply band together and run their own clinical trials, leaving drug companies and physicians out of the loop.
Do social networks bring about positive behavioral change?
Is there a role for insurance companies in this conversation, or is this level of mis-trust so high that they should just stay out?
My experience after many years with diabetes is that anytime several people get together to share experiences and frustrations we all benefit from it.
These may be small things, like suggestions for exercising while on insulin, or using new sites for placing an insulin pump infusion set, or testing blood sugar.
But engaging with others who are going through the same health challenges can produce much bigger results like: persuading Disney to pull an episode of Hannah Montana because of how it portrays life with diabetes; or changing laws to help protect the rights of those using insulin to drive or pilot planes.
What's your experience with social networking sites?
Have they helped you improve your diabetes control, or your quality of life with diabetes? Which sites have helped you the most? What is missing from these sites?
And if you have found some that work for you, do you think you'll continue to use them?
I know that I've been very quite on the blogosphere for the last several weeks. I appreciate more than I can express all the comments and e-mails asking me how I'm doing and wishing me the best.
I won't bore you with the details here except to say that I'm in the middle of some type of depression. It's not earth-shattering and for those of you who have diabetes, it's probably not entirely unexpected. Taking care of a chronic disease is a big burden and it takes its toll. The good news is that I'm working pro actively to get this under control and get through it. And in the meantime I'm focusing on essential activities because I've not got a whole lot of energy for other things.
It's been a busy year on the blogosphere and busy one for me. I've been blessed with a lot of accomplishments over the last year, in no particular order:
I met Allison and Mel in Boston. It's always fun to get together with fellow diabetics! If you're going to be near Boston in 2008, please let me know.
I got to some meetings of the insulin pumpers group that meets in Woburn, MA each month. A fun, supportive and informative group. Every state should have a group like this.
I marked my 35th year with diabetes by raising over $11,500 for research in a diabetes bike ride. Hint: it's not too late to support this.
I received an award from Lilly and Joslin for 25 years with diabetes. Thanks Dr. Spatola for organizing this one.
I setup the diabetes search engine. It now indexes over 800 sites and I like to think that it's helpful for folks.
I joined the great TuDiabetes.com social networking site for diabetes. Big kudos to Manny for starting this.
I worked together with Beth to start the diabetes365 project (originally her idea). As of today there are about 1,750 photos that give some insight into what it's like to live with diabetes.
I almost completed NaBloPoMo for this year. I didn't post for every day of November. Next year will be better.
I started using the Dexcom STS continuous glucose monitoring system and moved to the Dexcom SEVEN system later in the year. Life with a CGM is a lot easier, though it still has its frustrations.
And of course I posted many blog entries. Along the way I hope that I informed some readers. I know that I learned a lot from your comments and I also managed to get lots of practice with my writing skills.
So what's in the cards for 2008?
I'm getting some blood drawn in January as part of the research for Dr. Faustman's work on a possible cure for Type 1 diabetes. No, I'm not getting an early version of the cure, I'm just donating blood samples for the work. I hope to meet her and ask a few questions, I'll let you all know what I learn.
I'll keep blogging, though maybe a little less.
I hope to get involved in another fund-raising bike ride in September.
You know how it is with friends. Sometimes I meet someone by accident and feel like I've known them all of your life. There's a comfort there. I can spend all day with a good friend and still want for more.
Then there are more challenging friendships. I meet them and it's not an immediate connection. Whenever I'm with them I come away wondering how I feel about it. Was it uncomfortable? Well...maybe. Do I want to see them again? Yes and no. If anyone looked at me beside them they'd comment on how awkward it looked. "Why are you spending time with that guy, are you crazy?"
But with time it can grow into deep friendship and occasionally even love. Or sometimes I just learn to be with them. I start to understand where they're coming from and they mold me and change me whether I want them to or not. I get used to their walk, or the weird things they like to eat. Now when my family sees us together they say "Oh there go the two of them, again".
And much later in life I can look back and appreciate the value of acceptance.
My friend isn't perfect but they've helped me to see my own faults and weaknesses. Like it or not, their influence has been really helpful in lots of ways. Big and small.
I met this friend of mine a little over 35 years ago. Back them I was just a teenager with all the challenges that brings. And if you'd asked me then about it, I'd have told you how much I hated it. My diabetes.
Not a day goes by when I don't think about a cure. And what it would mean for me to say goodbye to diabetes.
You'll think me crazy, but I might even miss it a bit. Not always, maybe just when I see myself slipping from some of the good habits that diabetes has taught me. Like acceptance.
My child, you must follow and treasure my teachings and my instructions. Keep in tune with wisdom and think what it means to have common sense. Beg as loud as you can for good common sense. Search for wisdom as you would search for silver or hidden treasure. Then you will understand what it means to respect and to know the LORD God. Proverbs 2:1-5.
The Diabetes Technology Blog is focused on using technology to life better with diabetes. I review: blood glucose monitors; continuous glucose monitor; blood sugar meters; diabetes software and living with diabetes.
About Me
Name: Bernard Farrell
Location: Massachusetts, United States
I was born in Ireland and now live in the US.
I have had Type 1 diabetes for over 36 years. I struggle with my blood sugar, the same as most people with diabetes.
I wear a Cozmo 1800 insulin pump and a Dexcom SEVEN Plus CGM to track my blood glucose levels.
I'm blessed by God, and every day brings the possibility of a cure.
These may be small things, like suggestions for exercising while on insulin, or using new sites for placing an insulin pump infusion set, or testing blood sugar. 
