About My Chronic Disease Secret

On Monday I asked the Internet why there wasn’t a “My Cancer Secret” similar to My Diabetes Secret.

Yesterday, with some help, I took matters into my own hands with the launch of My Chronic Disease Secret.

I wrote an introductory post, which you can read by clicking on this link. Here’s the punchline.

But diabetes isn’t the only chronic disease impacting lives around the world. Where is My Cancer Secret? Why isn’t there a My Cystic Fibrosis Secret? Shouldn’t there be a My Depression Secret?

Here it is.

My Chronic Disease Secret is building upon what My Diabetes Secret started, offering a safe place for anyone living with or impacted by a chronic disease to share their secret free of shame, of stigma, of judgement.

More will surely follow as this gets off the ground, but I feel good about this one. Given how much of an impact (I believe) My Diabetes Secret has had on the diabetes community, it only seems natural, and fair, to give the rest of the chronic disease community an opportunity to share what they are feeling.

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My Latest Symplur Post is About #hcsm

While the 117,637 cumulative users, 1,366 participants with more than 100 tweets, and representation in 217 countries is fantastic #hcsm participation data, I think 20 is the most impressive number. At least 20 different tweet chat communities exist, in part, because someone participated in a #hcsm chat and wanted to do more for their community. Of course this says nothing of the non-profit organizations, outreach and advocacy programs, and other patient-generated initiatives that owe some form of thanks to the #hcsm community for planting or cultivating an idea into action. This shouldn’t discount or discredit the amazing accomplishments of the other patient communities and their respective tweet chats. But I think it’s clear that #hcsm is more than just a hashtag, it’s a social movement.

This month I wrote about “The Influence and Impact of #hcsm” for Symplur. If you like data, you should go read this.

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A Moral Obligation

This is a portion of my conversation with Dr. Mike Sevilla about the measles outbreak and the role of the medical community with respect to online discussion about things like vaccinations. My question to him, and to you my eager-readers, is do you think medical professionals have a moral obligation to speak up when misinformation is spreading online? While the Hippocratic Oath is more an abstract set of principles than a specific code of conduct these days, do you think these types of interactions are an extension of the Hippocratic Oath?

I’m curious about what makes people want to speak up in certain situations. Obviously the discussion around vaccinations is prime time as a result of the measles outbreak, despite the fact that “there is not a causal relationship between certain vaccine types and autism”. But would a flurry of doctors on social media, like the #MeaslesTruth TwitterStorm, linking to the CDC and citing other credible, reliable sources do anything to curb the hysteria? Where is the tipping point in this type of conversation that would result in rational decision making by the general public?

How might we better use social media to counteract social panic? How might we better leverage the inherent trust we place in our medical professionals to spread facts when they are most needed?

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Just Talking with Dr. Mike Sevilla

Dr. Mike Sevilla joins me to talk about his TEDxYoungstown speech, how to prepare a speech about social media, and healthisprimary.org. We also discuss the measles outbreak, the discussion around vaccinations, and the role doctors can (and must) play in using social media to help educate the public. Enjoy.

Follow Dr. Sevilla on Twitter @drmikesevilla and drmikesevilla.com.

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Here’s a Thing I Wrote for Symplur

This one looks at how different patient communities approach the new year, to what extent goals and resolutions are shared, and what makes for an open conversation among these communities.

Here’s a snippet.

While the how much question is worth considering as you engage this data, I think it’s equally important to look at the how. How were these communities prompted to engage with the topic of goals and resolutions? How well did those prompts foster a conversation among their respective communities? How might we evaluate the different approaches to this topic and find the optimal way to encourage goal setting and sharing?

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