#DayOfDiabetes … a day in the life shared in real time

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My name is Christopher Snider (@iam_spartacus). I’ve been living with type 1 diabetes since October 2002, and writing about my life with diabetes at http://tobesugarfree.com for the past five years. Last year I challenged myself to document every thought and action related to diabetes over a 24-hour period. I used the hashtag #dayofdiabetes to keep track of everything I shared in a Storify post after the day was finished. I used the positive reception to encourage other members of the diabetes community to share their own Day of Diabetes; as no two days of living with diabetes are alike and everyone’s life with diabetes is worth sharing. Since then I’ve published an additional twenty two (and counting) Day of Diabetes entries on http://dayofdiabetes.tumblr.com.

This past week, the diabetes community decided to designate Thursday, April 10 as another Day of Diabetes. After two days of publicizing prior to Thursday, tweets tagged with #dayofdiabetes started first thing Thursday morning.

What follows is a brief analysis and investigation into some takeaways from this past Thursday’s efforts.

The People

Day of Diabetes is first and foremost about the people and their individual experiences. 276 unique users used #dayofdiabetes in one or more of their tweets on Thursday. To put that number in context, Symplur has created a nice little image featuring the Twitter avatar of every participant.

After the stories, the connections built are another major takeaway from participating in Day of Diabetes. Again, with the help of Symplur, here is a network centrality graph, showing the users most central to the #dayofdiabetes conversation. The bigger the bubble, the more times a user was mentioned. Seeing my own name with a sizeable bubble isn’t that surprising as Day of Diabetes was my idea. The other three stand-outs represent some of the most influential people in the diabetes community:

Between their own retweeted tweets, and retweets of others, these Kelly, Kerri, and Kim stood out qualitatively with their interactions within the community, and quantitatively with their respective number of mentions. Further analytics into diabetes hashtags would likely yield these three in the top 5 of any network centrality graph, it makes sense that they would stand out during a #dayofdiabetes.

One final note on the people who interacted with the hashtag. Of the top 25 mentions, only 2 were representing organizations, products, or acting as retweeting “bots”. Of the top 50 participants, 9 were identified as an organization, product, or “bot”. Events like this rely on the community to stand out and dominate the conversation. It’s easy for hashtags to get hijacked by spam and Twitter accounts that are looking to capitalize on hashtag use, but the prevalence of real people with diabetes owning this conversation is a personal point of pride for me when I look back on the day’s activity.

The Tweets

While the people are the core of #dayofdiabetes, the tweets are the mechanism that rightfully receives the most analytical support. Looking at the 50 most used words within tweets tagged with #dayofdiabetes, it’s difficult to see one word receiving overwhelming use throughout the day. I think this speaks to the variability that comes with living with diabetes. Some people manage their diabetes with an insulin pump, others with insulin pens. Some people rely solely on a blood glucose meter to provide numerical insights, others include a continuous glucose monitor. Others don’t require insulin at all. The point is that no two people with diabetes are living the same life, as such, the variety of words featured in tweets about their lives with diabetes is quite expected.

When analyzing the timing of all of these tweets, there are a few points worth noting. First, the surges in the timing of tweets correspond with typical meal times. Generally speaking, the order of operations for a meal for a person with diabetes is: check blood sugar, calculate insulin required for carbohydrate content in meal, adjust for physical activity and insulin already in system, take insulin (bolus), eat. As I said, this is an extreme generalization, and each of these steps comes with a number of caveats, substeps, and branching if-then statements that impact what needs to be done to prepare for a simple lunch. It makes sense then, that all of the work required to eat receive the majority of tweets tagged with #dayofdiabetes.

The volume of tweets might seem overwhelming to the uninformed, but that’s the point of #dayofdiabetes. There’s a lot that goes into managing this disease each and every day. We took to Twitter to share the details that most people don’t recognize. Because every action we take can influence, or can be influenced by our diabetes, sharing a #dayofdiabetes is a way to educate and inform the uninitiated.

One curious number that came from all of these metrics is 5.4. That’s the average number of tweets per user who engaged with #dayofdiabetes. While 276 people started their #dayofdiabetes, clearly 276 did not finish documenting their day. While I can’t speak with certainty as to the specific reasons for this, I have a few theories.

• Diabetes is tough. For newcomers to #dayofdiabetes, taking the time to think about every thought and action related to diabetes management can be overwhelming. Once the general theory of diabetes management is understood, a lot of the steps taken are somewhat automatic, adjusting for variables as they come, but not with critical thought behind them. Once you start to think about each and every step that is required to properly take care of your diabetes, the voluntary act of sharing that information with Twitter becomes an afterthought.

• Holding back. If I truly took the time to document every single thought and action associated with my diabetes management, I would likely have my Twitter account suspended due to hyper-activity. Despite turnout that I’m quite proud of, I know that these tweets are filtered and moderated. Twitter isn’t realtime enough for a true #dayofdiabetes, but this is still the best platform to get to an experience that is as close to the real thing as possible.

• A good day. Some days, diabetes cooperates. Some days, every blood sugar check is in range. Some days, bolus calculations for food are exact and insulin acts perfectly. Some days, there are no diabetes issues or problems or mishaps to report. Some days it really is that simple.

Final Thoughts on #DayOfDiabetes

I shared my first #dayofdiabetes because I wanted to see if I could commit to the experience. I encouraged fellow people with diabetes to try and document their own day. Before I contacted Tom Lee (@tmlfox) at Symplur, I never truly understood the reach and impact possible by all of these tweets. Thanks to Symplur, there are numbers behind the hashtag.

From the 276 users who engaged with #dayofdiabetes, and their 1,500 tweets, 2,586,570 impressions were made over the day that spanned from midnight Eastern Time to the following midnight Hawaii Time. Over 2.5 million opportunities to educate, inform, debunk myths, and invite others to interact with the diabetes community. The one number I can’t report on, however, is the number of people with diabetes who were inspired to become active members of the online community.

My hope is that of those 2.5 million impressions, at least one of them helped someone new find the motivation to improve their own diabetes management. I hope that at least one of those impressions turned a Twitter lurker, to a thought-leader within the diabetes community. I hope that at least one of those impressions helped someone with a loved one living with diabetes understand what we go through on a daily basis a little bit better.

Unfortunately, there isn’t a metric for personal growth resulting from Twitter interactions. Yet.

Christopher Snider - @iam_spartacus

As the Patient Community Advocate at Symplur, Christopher is responsible for bringing data to the patients. He believes in the power of storytelling, that the stories we share strengthen patient communities, and that every story is worth telling no matter how ordinary it may appear to be on the surface.