My mom’s been complaining that my latest posts have been too long. So I’m attempting to keep this one brief — despite the humongously eventful week I have behind me.
Extremely Brief Notes on Health 2.0
The second annual Health 2.0 Conference here in San Francisco was huge, up to nearly a thousand attendees from just half as many last year. This event brings together people from all walks of healthcare and Web 2.0 health technology innovation for networking and idea exchange.
Not only were the SugarStats guys in attendance, working the expo to find their next integration partners, but I finally got to meet face-to-face with Ethan Mullis and Joe Milam of LogforLife — the newest online logging tool that won this year’s DiabetesMine design challenge. Ethan and Joe are both Type 1s, so needless to say, we bonded. One key idea we kicked around: we all have too many different online profiles already (Google, Twitter, Facebook, LinkedIn, etc., etc.), so wouldn’t it be nice to have a “diabetes dashboard,” i.e. on integrated place where you can access all your health/diabetes stuff in one place? That means your BG logging program(s), personal health records, AND your social network IDs? Just another idea to make all this “Health 2.0” stuff more manageable and useful.
Quote of the day, in my mind:
What do Social Networks really do for Patients? “Make you feel like, ‘I’m not the only weirdo experiencing this.’”
— Thanks to Bill Allman of HealthCentral Network for that one.
The panel I moderated on Patient Social Networks (there were 9 this time), included three of “ours”:
• dLife – which is about to launch a major upgrade to its website community area. In addition to their “message boards,” they’ll be adding an area with a look and feel more like “real” social networks, where members can create a profile page and create a list of online friends, etc.
• TuDiabetes – Manny previewed his touching video showing the children’s drawings, and talked a lot about reaching the Latino population. He’s also been selected to author the new book “Ning for Dummies.” Go, Amigo!
• DiabeticConnect – the new community I’m involved in has over 10,000 members since June! Lots of Type 2s on the site, many of whom are new to all this online stuff. DC is also introducing a new area to invite caregivers to get involved.
Even Briefer Thoughts on Hoping for a Cure
Please read Lee Ann’s post “Hype or Hope? Neither, Thanks” in response to my call for questions for this weekend’s DRI Conference. She talks about growing up “on the roller coaster” of believing in every possible cure that came along, and having her hopes dashed again and again.
I hear her loud and clear. But my experience is fundamentally different, since I was already a cynical adult when I was diagnosed. I can honestly and wholeheartedly report that I DO NOT EXPECT TO SEE A CURE IN MY LIFETIME. That’s just what I believe.
It’s something that folks in the PR world call “setting expectations.” I have no expectations, therefore I do not face disappointment.
Like Lee Ann, I’ve poured my energy into focusing on living the best we can now with this disease:
“Living well and being happy with diabetes is a delicate construct that is tested every day with fluctuating BGs, imposing tasks, and endless responsibility… Better to appreciate the life I’m living than pine for the one I can’t have.”
That and, of course, supporting the efforts to discover a cure for future generations.
Finito.
Hi Amy. Just wanted to make one correction to your blurb on dLife. While you’re correct that we are launching a new community area, we are *not* dropping our message boards. Instead, boards will be integrated into the community experience.
I’d appreciate it if you could make that update. I wouldn’t want any of our regular message board users to get the wrong message. Thank you!
Paula
Got it, Paula. Fixed, thanks.
- AT
It was good to finally meet you at DRI in New York. I wish I’d been able to make the Health 2.0 conference, but flying west on a personal budget isn’t an option.
I wasn’t a cure believer until about 2004 when I heard about Faustman. Now there’s a number of different projects going on that makes it seem possible that ‘a cure’ might be available…soon. Given that the FDA will have to vet this, I think that soon means not for another ten years, and 15 is a better timeline. So keeping yourself healthy in the meantime makes a lot sense.
It is great to hear more people say what I believe is true about “a cure in my lifetime” : Won’t Happen. That’s why I mark all my donations to JDRF to be used for the artificial pancreas project. Success in that project would be a huge help in healthy management and quality of life. The knowledge uncovered along the way may advance the cure cause, too.
My husband and I haven’t given much thought to a cure. But since our daughter is only 4 we are confident that there are going to be great advances in treatment and care in *her* lifetime.
I have felt that a cure will happen, but not in my life-time. After all, I’ve been living with diabetes since 1979. There comes a point where I needed to accept that a cure may not happen for me and get on with focusing on how to live with this disease every day. I sprung the “cure in our life-time” question to Bernard as we shared a train-ride home on Saturday – and between what he told me and what I heard at the DRI Conference, I am less cynical about it happening. But I think for me, it’s better to live my life with the assumption that I will have this disease for the rest of my life, so I’d better do all I can to stay in the best health possible.
That said, I sure do believe a cure will be found in Leeanthro’s 4-yo daughter’s life-time.