Patient Community Advocate at Symplur

Today marks my first official day as Patient Community Advocate at Symplur. This means I get to look at all kinds of data collected by Symplur’s extensive tools and figure out ways to bring the patient communities into these data-based conversations. This means I get to venture out into the scary world of freelancing with a mighty first step. This means I get to take on new projects that could help impact and shape the future of online disease communities. This means I have a chance to truly contribute to something – to one day look back and say “I built that”.

It also means I get to write blog posts using data provided by their reporting tool, Symplur Signals, like this one about World Diabetes Day and the #wddchat14 hashtag. And I get to create fun animated gifs like this one

Created by me, via symplur.com (linked)

Created by me, via symplur.com (linked)

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Slowly Fading

Maybe it’s because of the holidays. Maybe it’s because we are focusing more on side projects. Maybe it’s because Facebook and Twitter are becoming the standard for communication. Maybe I just need to be better about finding new content. But the Diabetes group in my Feedly Reader feels abandoned.

The number of blogs without a recent update becomes too much to count with fingers and toes, and I can’t help but wonder what is happening to the diabetes online community?

The truth, of course, is that we are stronger than ever. Connections are forged, found, and maintained on a variety of platforms and we are accomplishing great things together. Seeing what happens online conversations moving offline is great, it’s one of the universal efforts of the members of the diabetes community I look to and up to. And I know it’s unrealistic to have every medium hosting diabetes conversation maintain its relevance over the years. I just wish there was more.

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Just Talking about the DiabetesMine Innovation Summit

This week is all about the DiabetesMine Innovation Summit. After completing its fourth year of gathering a wide range of perspectives to talk about the future of diabetes care, Amy Tenderich, editor in chief of DiabetesMine sets the stage for the rest of the podcast. Also featured are three recipients of scholarships to attend the summit – Neal Ulrich, Rosy Karna, and Cooper Galvin – their takeaways from the day-long summit, and their perspective on including the patient in health care conversations. Enjoy.

Special thanks to all of my guests:

  • Neal Ulrich – nmulrich at stanford dot edu
  • Rosy Karna – rkarna at stanford dot edu
  • Cooper Galvin – coopgalv at stanford dot edu

For more information about the DiabetesMine Innovation Summit, visit diabetesmine.com, check out the presentations from the summit on Slideshare, and see the DiabetesMine Patient Voices 2014 video.

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Just Talking About Blood Glucose Meter Satisfaction

This week I spoke with Rick Johnson, Director of Healthcare Practice at JD Power and Associates about the recently released Blood Glucose Meter Satisfaction Survey. We also discussed the mechanics behind the survey, conclusions, and the general state of diabetes technology. Enjoy.

More information about the Blood Glucose Meter Satisfaction Survey can be found at jdpower.com.

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The Me Too Conundrum

Image (linked) captured from My Diabetes Secret

Image (linked) captured from My Diabetes Secret

Finding someone who gets it is great. You don’t have to explain the basics. You don’t have to explain the details. Jargon and slang become the common language. It’s like being part of a secret society that happens to affect more than 29 million (diagnosed and undiagnosed, regardless of type) people.

But in order for them to “get it”, they have to go through the same struggles you do. They have to experience the fear, dread, anger, sadness, frustration, confusion, and maybe even depression. In order for them to get it, they have to have it. And that sucks.

I’m a firm believer in the power of “me too”, I just wish it didn’t come at such a cost.

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The One Where The Diabetes Community Crashed The FDA

Unfortunate? Ironic? Awesome? All of the above?

Unfortunate? Ironic? Awesome? All of the above?

I think the biggest sign that you’re on the right track in engaging a community in a collaborative discussion is when that community shows up in numbers so overwhelming, your livestream crashes and (apparently) cripples the entire FDA network.

Or as Jenny McCue of HCMStrategies put it,

If you live with diabetes, know someone who does, or even if you’ve seen a movie with someone who has diabetes in it, then you know the disease sneaks up on you. It hits you when you want it the least. Outside of the amazing response our community showed, having the FDA system crash and have to keep going is one of the most persuasive testaments we could have delivered.

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