I wrote this for My Diabetes Secret, but I figure it’s worth sharing here, too, since I repost a lot of stuff from that blog. For context, I’m constantly thinking about how I can improve My Diabetes Secret and My Chronic Disease Secret. Simply being is not enough. There are better ways to connect people with the blog, each other, and if necessary the proper resources they need. Am I doing everything I can to serve whatever mission I have in my head with all this stuff? Probably not, but I’m going to keep working to make it better. I can promise that much.
I’m incredibly proud of the turnout #dayofdiabetes garnered yesterday. There was a lot of a lot going on, but I think the net message was well communicated – this thing we do every day, managing this disease and staying alive, is not easy. And, the diabetes online community can be quite vocal when called to action.
I haven’t had an opportunity to dedicate enough time to look at all of the metrics, but here’s what I can share after a quick glance at some Symplur data…
- You all showed up. Big time. 2,248 tweets from 362 users. For reference, last year’s group #dayofdiabetes effort (April 10, 2014) generated 1,495 tweets from 275 users.
- Compared to last year, total impressions more than doubled. From 2,600,626 in 2014 to 5,349,262 yesterday.
- It should be noted that total #dayofdiabetes data received a significant bump from the #dsma chat that took place last night, thank you Cherise.
What I want to look at, for my own curiosity, and in anticipation of my upcoming AADE presentation is the overall makeup of the participants in both yesterday’s and last year’s #dayofdiabetes. How many patients shared their day? How many health care professionals engaged with and encouraged their peers to follow along? How many brands promoted the hashtag? How many brands abused the moment to promote something?
Christel Marchand Aprigliano is my guest this week to talk about all things Diabetes UnConference. From the origins, to planning, from execution, to lessons learned, we cover everything. Plus, we discuss the scheduled 2016 conferences, Christel’s 5 and 10 year plan for the UnConference, and revisit her podcast from many years ago, Diabetic Feed. Enjoy.
For more information about the Diabetes UnConference, visit diabetesunconference.com.
Tomorrow, April 15, I’m encouraging anyone who wants to participate to live-tweet a day in the life of a person with (or caring for someone with) diabetes. Use the hashtag #dayofdiabetes to keep track of everything, and I’ll do my best to Storify everything on http://dayofdiabetes.tumblr.com.
As a community, we’ve done this a few times, and I think each day has been more successful than the last in terms of outreach and impact. I’m hoping tomorrow will be just as meaningful for some of you.
In case you need a reason to join the fun, here are seven reasons that might do the trick and get you to participate.
- You can find new people in the diabetes online community to connect with. These group efforts are a great way to make new friends.
- It may help get over burnout. Sometimes a focused effort like this is just what you need to get back into the diabetes frame of mind.
- Sometimes an exercise like this can help remind you that this may not be easy, but you’re doing just fine keeping this disease in check. When you step back from all the tweets and realize just what it takes each and every day, that can be something you can be proud of.
- Help describe what it’s like to your friends and followers without diabetes. Sure, they may have an idea, but a play-by-play like this is quite effective at showing what it’s like, even if it’s only for one day.
- Consider each tweet a teachable moment. Together, this is an incredible educational opportunity. And that excites me.
- I’m going to bring back the first point I made, because like #dblogcheck, these community exercises are a great way to expand your network of diabetes connections. I would love to hear stories months from now that start with “I saw someone share their #dayofdiabetes and decided to participate. That was the first time I mentioned my diabetes on Twitter.”
- Selfishly, I need data. I’m speaking at AADE this year about Twitter metrics from the diabetes online community, specifically #dayofdiabetes. I would love to show up with some fantastic data from all of you to compare to last year’s efforts.
I saw my endo today. I tried so hard to drop every necessary hint for her to see how depressed I am. She didn’t understand. She told me to try harder. She asked what motivates me. The truth is, I don’t know. You’d think wanting to live would motivate me, but if even that doesn’t work, what ever will?
I feel like I really need to talk to someone, but every time I start to tell a friend about how much I’m struggling, they change the topic or ignore it completely, so I’ve stopped trying to open up to people because the reality is, no one cares enough to listen.
How might we provide better venues and avenues for people to share what they are feeling? When they need help most, are “we” failing the diabetes community?
I wish I could better remember my diabetes community discovery story. I know one of the first people I followed when I signed up for Twitter was @sixuntilme. I know at some point I started reading Kerri’s and other diabetes blogs. And I know somewhere in that process I reached a tipping point and created a WordPress account.
But I don’t remember the specifics.
And now, as I’m thinking more about how to expand and improve online disease communities, I feel like that information would be most helpful. For as active and engaging as the diabetes online community is, the numbers would suggest that we haven’t scratched the surface of potential outreach. Considering how many people are on Facebook, use Twitter, do…whatever you do on Snapchat, there’s so much more than can be done. But I don’t know how to begin to reach those people?