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Posts tagged ‘advocacy’

Guest Post: #SpareARose and Symplur.

I’m late with today’s post, but it’s a good one.  :)   This afternoon, Chris Snider of A Consequence of Hypoglycemia has contributed a guest post about Symplur and the Spare a Rose, Save a Child campaign.  It’s an in-depth look at how the stats of the #sparearose hashtag campaign influenced the spread of the message.  This post is an interesting peek at where analytics and community passion line up, and where they don’t.  Thanks, Chris, for offering your insight!

*   *   *

I started working with the folks at Symplur at the beginning of this year. My objective was to tell stories and bring the patient community further into the conversation around data – specifically the data they are generating through health conversations on Twitter. After the Spare a Rose campaign concluded, I reached out to Kerri to see if I could help shine a light on the 2-week whirlwind using Symplur’s fancy analytics tool, Signals. I was given four questions to try to address.

1. How did the message spread? Did it reach outside of people with “diabetes” in their profile?
2. What kinds of messages resonated on the whole? Calls to donate, stories about why insulin matters, etc?
3. Did people with small reach still have a big impact because of the close knit nature of the DOC?
4. Can the data prove that every voice does matter?

(1.) What the data says: people associating themselves with diabetes in their screen name, user name, or description represented 43.9% (321) of #sparearose participants, but generated 63.5% (5,825,580) of the impressions. What is difficult to report on is how many of these impressions overlap within the community. How many followers do each of the 43.9% have that are associated with diabetes in one form or another? How many impressions from the other 56.1% were made on people living with or associated by diabetes? It’s difficult to truly parse out where the venn diagram sits, but I think it’s safe to say the diabetes community came strong with their effort to spread the word. This does leave me with some bigger questions to consider for 2016: How might we increase the number of people sharing #sparearose that aren’t immediately associated with diabetes? Should that ratio always favor the diabetes community? How might the appeal of Spare a Rose better resonate with people without diabetes?

(2.) I tried to see what kind of activity was generated around tweets featuring the word ‘donate’ and ‘insulin’ as those are the two biggest subjects related to the Spare a Rose campaign. Every tweet including the word donate included a link to sparearose.org or the subsequent donation page. Similarly, 93% of links including the word insulin included a link to one of those two pages. It makes sense, right? If we’re going to ask people to donate, we need to show them where to go. If we’re going to appeal to the life-saving insulin #sparearose provides, we need to include a link to show people where to go. Looking past the percentages, however, reveals something quite curious. There were over twice as many (2.3x) tweets featuring the word insulin as there were the word donate. What would the final fundraising totals look like if more tweets mentioned the fact that one of the goals of #sparearose is to collect donations? Something to think about, perhaps.

One other stat I noticed was that of all the #sparearose tweets, 67% of the ones that were recorded were Retweets. I wonder what this data would show if more communication about #sparearose was original thought rather than rebroadcasting the words of someone else. To be fair, I’m just as guilty of this as the next person. Sometimes someone else does a better job of saying what I wanted to say and rather than repurpose someone else’s thoughts and words, a simple RT is enough to get the point across.

(3.) To address this, I tried to determine what maximum follower count yielded half of the total impressions from the reporting period. And, what maximum follower count yielded half of the tweets. Where is the tipping point in the makeup of participants that best represents how much of an influence a smaller following can generate. My impressions goal was 3,536,645. Tweets was 868.

Of all the people participating in #sparearose on Twitter, participants with 19,150 or fewer followers generated a little over half of the impressions recorded – How many participants have fewer than 19,150 followers? 97%. 19,000 twitter followers isn’t realistic for most of us, so to put all of this in perspective, participants with 1,000 or fewer followers generated 3% of the total impressions recorded. A single tweet from Crystal Bowersox makes a huge difference in terms of exposure.

Of all the people participating in #sparearose on Twitter, participants with 945 or fewer followers sent a little over half of the tweets during the reporting period. So, most of the tweets came from people with less than 945 followers, but they generated less than 3% of the impressions? My thoughts on this lead into the final question.

(4.) Do small voices matter? Unfortunately I can’t report on how many links were clicked, whose tweets generated the most clicks to sparearose.org. Crystal Bowersox understands the value of a vial of insulin, but do her 60,000 followers? But, for someone with 150 followers, how many of them are going to acknowledge and engage with a donation ask? It feels cold making all of this a numbers game, but the numbers fascinate me. Is there a point where you have too many followers to trust that any significant percentage will engage with a fundraising ask? How likely will followers outside of the diabetes community donate? Should we, all of us, try to cultivate a following outside of the diabetes community in addition to the relationships we build up among the pancreatically-challenged? Is it a matter of making the right ask or the right number of asks?

So we’re clear, I don’t think it’s the responsibility of the entire diabetes community to think about the nuts and bolts of how all this works. What matters most is the passion to connect with others and help educate whoever will listen to the reality that a little can mean a lot to a child with diabetes. Thanks to people like Kerri, we can make a difference. Even if the numbers from Symplur may suggest otherwise, believe me when I tell you that every voice does matter. Every one of you reading this, telling your story, paving the way for someone else with diabetes to feel safe enough to join our crazy little group, all of us are making a difference.

Happy Birthday, Dr. Seuss!

Happy birthday to Dr. Seuss!  He’s always been one of my favorite writers to read, recite, and then parody as needed.  In homage to the good doctor on his birthday, I’m revisiting a poem I wrote called A Human’s Resilient, One Hundred Percent! Because we are resilient, damn it.

*   *   *

Sighed Panky, a lazy panc deep in the gut
“I’m tired and I’m bored
And I’m stuck in a rut
From making, just making insulin every day.
It’s work! How I hate it!
I’d much rather play!
I’d take a vacation, or a long nap
If I could find someone to do all this crap!

If I could find someone, I’d kick back and chill …”

Then Panky thought, “Could Kerri be up for the thrill?”

“Hello!” called the lazy panc, smiling her best,
“You’ve nothing to do.  Does this sound too strange …
Would you like do the work I do for a change?”

Kerri laughed.
“Why of all silly things?
I haven’t islets or enzymes or things.
ME do your job?  Why that doesn’t make sense!
Your job is make insulin!  The thought makes me tense.”

“Tut, tut,” answered Panky.  “I know you’re not me
But I know you can do this.  Won’t you hear my plea?
Just pick up that needle and draw up the dose.
Once insulin’s flowing you won’t feel morose.”

“I can’t,” said the Kerri.
“PL-E-ASE!!” begged her panc.
“It won’t be too hard, kid.  Sorry to pull rank.
But I’m leaving regardless if you raise your voice.”

“You’re a jerkface,” said Kerri.  “Not to give me a choice.

I’m unsure how to do this. Details are the devils!
How do I keep steady my blood sugar levels?
What do I do? Can you leave me instructed?”

“You’ll figure it out,” and the panc self-destructed.

“The first thing to do,” murmured Kerri,
“Let’s see.
The first thing to do is to prop up this Me
And to make ME much stronger.  This has to be done
Because diabetes can weigh an emotional ton.”

So carefully,
Hopefully,
She searched, unimpeded
For the resources, tools, and support that she needed.

“I know that there’s life found after diagnosis.
It’s good and it’s worth it. That’s the prognosis.
I meant what I said
And I said what I meant …
A human’s resilient,
One hundred percent!”

Then Kerri, with peers and insulin by her side,
Well she tried
and she tried
and she tried
and she tried.

She kept at it for decades
Despite feeling perplexed.
It requires work one day,
Again on the next.
It sucks! Then it doesn’t!
But Kerri remained sure,
“My life’s worth this effort,
(Though I’d still love a cure.)
I wish Panky’d come back
‘Cause some days I’m so burnt.
I hope that my body thrives on the things that I’ve learnt.”

But Panky, by this time, was far beyond near,
And was dormant for good now. Diabetes was here
And was staying, so Kerri, for better or worse,
Had a pump on her hip, glucose tabs in her purse.

Diabetes is constant, day after day.
But the life in its wake is still good, plenty yay.
And even on days when the Stuff is Way Blah,
Life with disease is not life without Awe.
“It’s not always easy. Diabetes might test me.
But I’ll stay on task and I won’t let it best me.
I meant what I said
And I said what I meant …
A human’s resilient
One hundred percent!”

Some days it is simple. Some months are real hard.
Diabetes is something you can’t disregard.
But a panc on vacation doesn’t mean that you’re broken.
“You can still do this.”

Truer words never spoken.

 

[With apologies and thanks to Dr. Seuss,  this is in homage to Horton Hatches the Egg.]

Knowledge Gaps.

I wish I knew more about a lot of things.  Like dinosaurs.  (Mostly because Birdzone keeps asking me about them and what their names are and what kind of foods they liked to eat, and I’m not as brushed up on my dinosaur details as I was back in second grade.)

But there are things I truly wish I knew more about, in a diabetes sense, and I’m eager to learn.  One theme that’s come circling back around every few weeks is that of advocacy and influencing policy decision makers in Washington, DC.

This “lets all go to Washington!” advocacy, admittedly, makes me feel like an idiot because my knowledge gaps in this arena are obvious to me.  I know how to tell my diabetes story, but I don’t know how to made that story resonate for decision makers.  What makes issues matter to people?  What’s the best way to reach folks in policy?  How can one voice make a difference, and – more importantly – how can a collective of voices make the biggest difference?

We, as a community of people touched by diabetes, have the opportunity to learn from one another.  And I’m excited to do that, because I need to learn.  I want to be more effective as an advocate and for me, part of that process means closing some of my personal knowledge gaps.  (Here’s where programs like Masterlab are already so effective, and could be even more so.)

What do you want to learn (more) about?  Once we start minding the gaps, we can start filling them in with good information.

I want to learn more about effectively influencing health policy in a way that takes the best possible care of people with diabetes.  I want to learn more about how to make the most out of the healthcare I have access to.  I want to help empower myself to live well with diabetes, and to assist in empowering others.

Sparing roses helps.  It’s simple and makes sense to me.  But what else is there that can be done?

I seek education, dedication, and determination to help me find out.

(And yes, I’m sticking it into a blog post as a way to keeping myself accountable.)

Urgency – #Vote4DM and #DOCasksFDA.

Today is the last day to participate in the #DOCasksFDA survey.  The link is HERE and you can just CLICK ON THIS LINK and I’ll stop using the caps lock key.

Also, if you’d like to contribute your voice and share your dream for the future of diabetes, do it.  Do it via video, if you’re so inclined, like so many others have done.

Also, the Strip Safely team is bringing about a new advocacy initiative, using Twitter to target our legislators.  As the campaign tagline says, “We voted them into office.  Tell them to #Vote4DM.”  There are three diabetes bills that are currently in play up on Capitol Hill, and by visiting the Twitter page for Strip Safely, you’ll see some customized messaging all ready to go for your specific representatives.  For more information on the bills on tap and how you can raise your voice, CLICK HERE (damn it – that all caps button is my best friend these days).

Thank you, as always, for being such a crucial part of the diabetes community.  This whole thing would fall flat without you.  (SERIOUSLY.)

Walk with D: Join My Diabetes Journey.

How can people without diabetes understand what living with diabetes is really like?

This is why I have written this blog for almost ten years – to connect and share with my peers, but also to educate those who don’t exist in the diabetes bubble.  The DOC shares so much about their personal lives with diabetes in efforts to find community, empathy, and that whole, “Me, too!!” vibe.  But even within the diabetes community itself, there are levels of misunderstanding, misrepresentation, and mistaken messaging, often creating a divide where there should be a bridge.

By increasing understanding and empathy, we can work together to raise the visibility of real life with the ‘betes.  And the aim of the Walk with D campaign is to help peel back the layers of misunderstanding in efforts to build those bridges between the community itself and society.

Participation is simple: Share your story.  Using social media as your megaphone (like so many of us already do), show what your diabetes life is really like through blog posts, photos, tweets, status updates, and videos, and tag your stories with the #WalkWithD hashtag.  (Were you thinking about starting a Twitter account?  Today would be good – you’ll have three days to practice before #dsma!)

Gone are the days of stock photography representing diabetes (besides, it always pissed me off to see the stock photography lady who had diabetes one week and who also came back as a search for “office meeting frustration” – show me REAL PEOPLE with ACTUAL DIABETES, not the same reused stock photography model) – social media gives us the opportunity to replace the stock photos with real faces, real stories, and real life with diabetes.

To see the patchwork quilt of stories assemble real-time, check out the Tagboard in place at WalkWithD.com.

Together, we can create a collage that shows people both in and outside of the diabetes community the reality of life with diabetes.  This is what we do when we write blogs about our experiences, when we create videos, when we Tweet, and when we take on documenting a #dayofdiabetes.  This campaign is help us better understand one another, and to reach outside of the diabetes bubble and drop some diabetes slice-of-life on society as a whole.

Every voice matters.  I hope this campaign helps bring more voices to the community because I love learning from the DOC.  Are you caring for a child with diabetes?  Living with type 2 diabetes?  Newly diagnosed with diabetes?  Living with type 1 diabetes?  Gestational diabetes?  In a relationship with someone touched by diabetes?  There are so many different walks with D.  Connect with others touched by diabetes to understand their journey and to let them know that they don’t walk alone.

This advocacy campaign was developed by the Partnering for Diabetes Change group and runs from today through the end of Diabetes Month (9-15 through 11/30).  The goal is simply to raise awareness for, and highlight the dignity of, life with diabetes.  Walk with me, walk with D.

Bag of Hope … For Adults?

I’ve always thought Rufus was pretty cute, so when the JDRF link for their Bag of Hope flew by in my Facebook feed, I clicked.  (Rufus is my clickbait.)

According to the website, the Bag of Hope includes (but isn’t limited to):

  • Rufus Comes Home, A First Book for Understanding Diabetes, reference books
  • A JDRF DVD
  • An ACCU-CHEK® Nano SmartView blood glucose meter
  • Informational postcard about the support Lilly Diabetes offers families with a bookmark
  • Lilly Diabetes literature on severe hypoglycemia management
  • A Novo Nordisk key chain Webkey with details on the NovoPen Echo® reusable insulin pen
  • A Novo Nordisk postcard with information on T1D support from novologreach.com
  • A Road ID bracelet for Rufus, as well as a discount coupon for a Road ID bracelet for your child
  • Dexcom® continuous glucose monitor educational brochure and water bottle

I don’t know if the Bag of Hope was a thing when I was diagnosed in 1986, but the fact that they exist now is awesome.  I love this.  I love the thought that a family dealing with a diabetes diagnosis has proof of life after diagnosis, right there in a bag.  It helps connect people to the JDRF, but most importantly, it helps connect people with people.

But if there’s anything we’ve learned in the last 30 years, it’s that type 1 diabetes diagnoses are not limited to kids.  Adults are being diagnosed with type 1 diabetes.  Adults are living with diabetes.  And they still need a good dose of hope here and there, too.

The JDRF has their T1D Care Kit, which is awesome, a PWD can dream, rightt?  What would I stick in a Bag of Hope for Adults with T1D?

Here’s my wishlist [note: already being edited]:

I’m fueled by a bunch of bias with these selections, and I know I’m missing a bunch of things that, once I hit “post,” I’ll have to go back and add to the list, but this is my starter list.

What would you want to see included in an outreach bag for adults with type 1 diabetes?

 

Advocacy: Do It with Flair.

From @sixuntilme, after watching some of DarthSkeptic’s Tweets correcting diabetes misinformation fly by in my feed (thanks to @txtingmypancreas for highlighting):  “Why did you decide to take this wickedly funny high road?”

From @darthskeptic:  “It was partially based on frustration and partially based on ‘TheoryFail’ and ‘TakeThatDarwin‘ addressing and mocking people ignorant about basic science.”

Whatever the reason, I love seeing people who are tagging their desserts as #diabetes on Twitter being served up some education by @darthskeptic. Some examples:

And my favorite:

Carry on, @darthskeptic. Carry on.

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