Social Media

[LinksEtc]

So this is a bit connected to a lot of my other recent threads ... Research, Doc/internet, etc ...
but I thought maybe it could use its own general thread. 

Some possible topics:

Tips/links/info about social media (SM).

More personal stuff like what is your purpose for using SM for FA?  Which platforms (Twitter, Facebook, FAS type forums, blogs, etc.) do you use & why?  How are your IRL & online id's connected ... how public is your online id .... how much private info do you share online ... who from IRL do you "let in" to your virtual world ... has posting ever caused you problems from people making the connection who you wish hadn't?

Where do you think the big SM/health trends are heading?  What are the implications?

Other topics are fine also.

[CMdeux]

How are your IRL & online id's connected ... how public is your online id .... how much private info do you share online ... who from IRL do you "let in" to your virtual world ... has posting ever caused you problems from people making the connection who you wish hadn't?

Great topic!

I have been rather private about my location and my identity over the years-- I have also firewalled my online identity in that here (and a few other places where I also maintain anonymity) I do not mix those identities. 

I have occasionally steered people here in my other guises, however, if they seem to need the information that is to be had here.  I can count on both hands the number of people that I've known online who know my ENTIRE identity, however.

As administrator here in my alternate identity, I have outed myself to others IRL in also just a handful of instances.  My close friends know that I do this-- but most of them, even, do not know the specific url of this site. 

I am not on Twitter, FB, or instagram.

Partly, this is about me-- I'm an introvert and a deeply private person.  Partly, though, it is because I can be MUCH more forthcoming and detailed about what I post here-- because without those other pieces of identifying info (and yeah, people who have been here for years and years COULD put it all together-- I'm aware) they still don't identify either me, or-- more critically-- MY FAMILY.

I've considered the use of SM for FA advocacy-- but I've concluded that mixing the two streams is unwise... all it takes is one tiny little viral thing and your family's privacy is gone.  My DD is pretty vulnerable already by virtue of being an outlier in other domains.  So.

I do this moderating and message board thing pretty well.  So I'm sticking with that. 

[LinksEtc]

Thanks for sharing CM.   


I'll get back to this thread at some point ... not quite ready to discuss.

[Macabre]

Twitter and FB -- I keep my profiles completely separate from my profile here. For privacy reasons, I do not commingle them at all and very rarely, if ever engage with the FAS accounts.

Personally I tweet and post about FAs some but not much. My FB is locked down in terms of what I allow the general public to see. I do not friend coworkers period, but with Twitter I don't likit who follows me typically.  I'm in the midst of a job search, I am keenly aware of the fact that potential employers can and like do check my Twitter feed. I don't want my feed to reflect any one thing solely, so I keep my tweets diversified, though I do tend yo tweet in cycles and when I am utterly swamped (like now) don't tweet much.

[LinksEtc]

Interesting to hear how you use it McC.

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Tweeted by @joyclee

"Dear RWJF Clinical Scholar, Welcome to the Wonderful World of Twitter!"
http://twittersuperuser.com

Who uses Twitter?

Academics, Doctors, Researchers, Patients, Journalists, Students, Artists, Designers, Politicians, the President and the First Lady.

[LinksEtc]

Tweeted by @99u

"What Makes Facebook and Twitter so Damn Addictive?"
http://99u.com/articles/34943/what-makes-facebook-and-twitter-so-damn-addicting

We all struggle with habits bad and good. Perhaps by knowing and understanding the deeper workings of how habits with technology are formed we can begin to limit the bad and accentuate the good.

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Tweeted by @FirebrandTalent

"Does sharing on social media mean giving up privacy?"
http://blog.firebrandtalent.com/2014/07/does-sharing-on-social-media-mean-giving-up-privacy/

social sharing and privacy are not the same thing

It's up to us to set the boundaries of what we talk about.

[LinksEtc]

Tweeted by @SusannahFox

"We No Longer Live in the 1990s
Social media, Google, and the Internet ARE Medical Therapy"

https://medium.com/@joyclee/we-no-longer-live-in-the-1990s-8c5f43f16ca0

Reality #3: Google is the gateway to communities of expert patients on social media sites.

they are finding that information on social media. (Gasp!) Yes, social media! That dirty word in the medical establishment.

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Just a reminder - make sure you are seeing real docs including an allergist for FA .... don't just get your info from SM.

[LinksEtc]

There is a good chance that Dr-FA-Yoda has made the Links connection.     It makes one feel a little strange & vulnerable.   


That's ok ... I was ok with letting her in.   

Hope she's not upset with me.      I don't think so.

It will be a don't ask, don't tell situation unless she brings the topic up.

[LinksEtc]

Tweeted by @washingtonpost

"Everything Google knows about you (and how it knows it)"
http://www.washingtonpost.com/news/the-intersect/wp/2014/11/19/everything-google-knows-about-you-and-how-it-knows-it/?Post+generic=%3Ftid%3Dsm_twitter_washingtonpost

But if you want to avoid Google's gaze entirely, some more radical lifestyle changes may be in order — like, maybe consider quitting the Internet and moving into the woods

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Tweeted by @HeartSisters

"Case discussion on Twitter: how can we make best practice explicit?"
http://wishfulthinkinginmedicaleducation.blogspot.co.uk/2012/06/case-discussion-on-twitter-how-can-we.html

What should we tell patients about sharing their story? Do we need their consent if the story is not recognisable to others?

[LinksEtc]

Tweeted by @GomerBlog

"Hospital Staff to use Social Media to Update Patients, Direct Medical Care"
http://www.gomerblog.com/2014/12/hospital-staff/

I told her that her baby slept all night except for feeding and diaper changes, and she posted that Nicole had a terrible night!" Nurse Susan added, "I don't want her Facebook followers getting the wrong idea!"

It's a HIPAA-friendly way to keep families, friends, and total strangers in the loop!

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Tweeted by @ivanoransky

"Care taker blogs in caregiver fabricated illness in a child: A window on the caretaker's thinking?"
http://www.sciencedirect.com/science/article/pii/S0145213413003876

Protective Services and/or police investigators could consider querying the internet for blogs related to children at risk for caregiver-fabricated illness in a child. These blogs, if viewed in parallel with the children's medical records, could assist medical diagnosis and legal documentation of medical fabrication and assist in protective planning for the affected children.

[LinksEtc]

Tweeted by @HopkinsMedicine

"For cancer patients, social media outlets have relegated suffering in silence to a thing of the past."
http://www.baltimoremagazine.net/2014/11/1/top-docs-2014-media-matters

This is illness in the age of social media. Whereas disease was once a closely held private matter, a reason to draw the curtains and cancel all engagements, it is now, like so many other life events, a public act, documented in sometimes startlingly intimate detail on Twitter, Facebook, Instagram, YouTube, personal blogs, and even good-old-fashioned media like print, television, and radio. And while the benefits of such an approach are real and manifold, so too are the potential complications.

[LinksEtc]

Tweeted by @TrishaTorrey


"Doc said if he 'acts up again' give em' all at once!" How Far Is Too Far?
http://nurseinterupted.wordpress.com/2014/12/17/doc-said-if-he-acts-up-again-give-em-all-at-once-how-far-is-too-far/

There is a right way and a wrong way to vent, share your experiences, 'horror stories' or 'funny moments' in a way that doesn't misrepresent our profession and everyone who is a part of it or hurts healthcare consumers who may be reading your posts.

You are showing PATIENTS that we cannot be trusted, that they can assume the minute we leave their rooms we're going to go right onto our smartphones to tweet an update about the latest irritating incident with the "Fibromyalgia patient who thinks she knows more than me, the nurse."

[LinksEtc]

Tweeted by @subatomicdoc

"How Social Media Helps Young People With Cancer"
http://health.usnews.com/health-news/patient-advice/articles/2014/12/04/how-social-media-helps-young-people-with-cancer

On Twitter, patients may engage in weekly chats for specific purposes, such as #bcsm (breast cancer social media), #btsm (brain tumor social media) and #ayacsm (adolescent and young adult cancer societal movement), Zachary says.

A bit of edginess helps, too. Stupid Cancer by name alone carries this

[LinksEtc]

Tweeted by @subatomicdoc

The Power and Glory of Curation: An Interview with Marie Ennis-O'Connor (1st in a Series) network.socialmedia.mayoclinic.org/discussion/the... >@MeredithGould @JBBC #hcsm

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http://network.socialmedia.mayoclinic.org/discussion/the-power-and-glory-of-curation-an-interview-with-marie-ennis-oconnor-1st-in-a-series/

Meredith Gould: What about content curation most appeals to you?
Marie Ennis-O'Connor: It's been a terrific way for me to provide a steady stream of relevant content for my blog in a timely and efficient way.

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"Content Is King; Curation Is Queen."
http://www.congregation.ie/blog-papers/content-is-king-curation-is.html

I define content curation as the process of finding and aggregating information about a specific topic, synthesizing it to be most relevant to your audience, and sharing it in an easily digestible manner.

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Tweeted by @JBBC

"The Appeal and Challenge of Curation: An Interview with Elin Silveous (2nd in a Series)"
http://network.socialmedia.mayoclinic.org/discussion/the-appeal-and-challenge-of-curation-an-interview-with-elin-silveous-2nd-in-a-series/

Select: Is it relevant? Timely? Will it help others (consumers, patients, providers, policy makers) become more informed, confident decision makers? If not, will it at least entertain?

[LinksEtc]

Tweeted by @mtmdphd

"How Twitter has Changed"
http://linkis.com/ow.ly/l84Zs

My personal evolution with Twitter has been just like my evolution with every other tool of public communication over the past eight years.  I start using it one way, then end up using it another way.