Social Media

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Tweeted by @helenbevan

My favourite slide in minicourse M5 on radical change:"Collaborating in a social era" via @oscarberg #IHI26Forum pic.twitter.com/R6r5epfuTw

https://mobile.twitter.com/helenbevan/status/541676375682596865/photo/1

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Tweeted by @joyclee

A Teenager’s View on Social Media
Written by an actual teen

https://medium.com/backchannel/a-teenagers-view-on-social-media-1df945c09ac6

I read technology articles quite often and see plenty of authors attempt to dissect or describe the teenage audience, especially in regards to social media. However, I have yet to see a teenager contribute their voice to this discussion. This is where I would like to provide my own humble opinion.

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Tweeted by @tessajlrichards

"What I know I owe to patients"
http://www.bmj.com/content/349/bmj.g6734.full?ijkey=F95A78Jje5c3h1v&keytype=ref

There was so much I didn’t know, as a young doctor, about how my patients felt, what they saw, what they wanted from me, and for me. How could I have known? But today, a new world is coming into being. Patients and carers are sharing their experiences online, creating new opportunities for health professionals to see the world through their eyes.

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Tweeted by @colleen_young

"Story becomes the ground that patients & healthcare professionals travel together." @JBaruchMD #hcsmca Wed 1pm ET wp.me/p12yz4-Kd

https://cyhealthcommunications.wordpress.com/2014/12/08/rx-narrative-story-as-medicine-dotmed14/

How has social media changed the way we share our illness stories?

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Tweeted by @B2Bspecialist

Learn about what works for online community management by watching video by @colleen_young on my blog: buff.ly/1zyQ945

http://mi6agency.com/wp/community-models/?utm_content=buffer5c83e&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

Colleen talked about best practices in starting and growing an online community and demonstrating the importance of community management, data collection, content creation, collaboration, and other proven techniques that ensure the survival and steady growth of a thriving online community.

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Tweeted by @michaelseid11


"Kim Vlasnik - ePatient Ignite! Talk"
https://m.youtube.com/watch?feature=youtu.be&v=HwiIZ8TnZJw


1:16

The hard part of living with diabetes for me is the psychosocial impact. It's the cognitive burden of trying to manage a disease so insidious and pervasive and never getting a break from it.

2:30

my disease is not a punch line

3:47

finding a community of people who "get it"

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Although many try, docs often can't "get it".



Tweeted by @kevinmd


"The cancer metamorphosis is different for each patient"
http://www.kevinmd.com/blog/2015/02/cancer-metamorphosis-different-patient.html

No matter how much family or medical caregivers try to empathize, to connect, to understand, surviving cancer is a deeply changing and highly personal experience.  The patient I quoted at the start is a gifted, loving and highly experienced cancer provider, with three decades at cancer’s bedside.  None-the-less, she was astonished to experience the transformation in her own life, which is before and then after cancer.

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Tweeted by @amcunningham

health communities and disclosure - fabulous #medx panel from @colleen_young @MeredithGould @SusannahFox @pamressler

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"Communicating the experience of illness in the digital age"
https://m.youtube.com/watch?v=rBdYLhiucnE


:25

In writing and sharing comes healing

17:12

It is so brave of people to share online and to help me to become a better caregiver and we don't acknowledge that, we don't acknowledge the public service, and the gift that can never be repaid

33:37

basically what we have online is access to many many more connections and possible relationships than we could ever hope to have in the flesh

34:29

I think it's at gatherings like this that where we really start acknowledging patients, taking them seriously

36:55

I have not viewed the internet as a huggable situation

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Tweeted by @AllenFrancesMD

"Risks in Using Social Media to Spot Signs of Mental Distress"
http://www.nytimes.com/2014/12/27/technology/risks-in-using-social-posts-to-spot-signs-of-distress.html

“A tool that ‘lets you know when your friends need support’ also lets you know when your stalking victim is vulnerable #SamaritansRadar,” a Briton named Sarah Brown posted on Twitter.

it could potentially pave the way for insurers and employers to use such techniques covertly as well — with an attendant risk of stigmatization and discrimination.

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"When data gets creepy: the secrets we don’t realise we’re giving away"
http://www.theguardian.com/technology/2014/dec/05/when-data-gets-creepy-secrets-were-giving-away?CMP=share_btn_tw

Information we have happily shared in public is increasingly being used in ways that make us queasy, because our intuitions about security and privacy have failed to keep up with technology.

An interesting side-effect of public data being indexed and searchable is that you only have to be sloppy once, for your privacy to be compromised.

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Room for Debate

"Children and Digital Privacy"
http://www.nytimes.com/roomfordebate/2014/08/17/children-and-digital-privacy?emc=edit_th_20140818&nl=todaysheadlines&nlid=40926583

It seems like a young viral star is born every minute, but sometimes in between the admiring online comments, the conversation turns to digital privacy and sharing. Most young parents seem to be doing it, but that hasn’t stopped debate about the drawbacks of posting images of children online.

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Tweeted by @Skepticscalpel

"MD degree may not teach doctors how to tweet"
http://mobile.reuters.com/article/idUSKBN0K90ZA20141231?irpc=932

The speakers found 16 of the tweets accurately reflected their findings, while an additional 16 posts were partially accurate. In three instances, the tweets misrepresented key points. In two cases, the speakers were uncertain about the accuracy.

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Tweeted by @TweetSmarter

"Pretty Much Every Smart Home Device You Can Think of Has Been Hacked"
http://tinyurl.com/pnetkl2

But it isn't really a coincidence that where we want an Internet of Things, we get a year of hacks. The more devices and points of entry there are on a network, the more opportunities there are for an intruder to find a sneaky way in.

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"Midnight Friends: How Wired Patients Are Transforming Chronic Illness"
http://commonhealth.wbur.org/2014/05/midnight-friends-wired-patients-chronic-illness

This goes far beyond Googling your child’s weird rash: these millions of “empowered patients” are joining social-media communities, consulting online health databases, learning and sharing knowledge about drug side effects, crowdsourcing research studies, electronically monitoring their health and becoming health care activists who share what they’ve learned with their doctors.

Only now are doctors beginning to quantify how social media might actually help improve health.

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Tweeted by @GoAllergy

"Factors associated with good adherence to self-care behaviours amongst adolescents with food allergy."
http://www.ncbi.nlm.nih.gov/pubmed/25586900

Membership of a patient support group and having an anaphylaxis management plan were associated with good adherence to self-care behaviours in adolescents with food allergy.

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"Twitter Can Predict Rates of Coronary Heart Disease, According to Penn Research"
http://www.upenn.edu/pennnews/news/twitter-can-predict-rates-coronary-heart-disease-according-penn-research

Twitter has broken news stories, launched and ended careers, started social movements and toppled governments, all by being an easy, direct and immediate way for people to share what’s on their minds. Researchers from the University of Pennsylvania have now shown that the social media platform has another use: Twitter can serve as a dashboard indicator of a community’s psychological well being and can predict rates of heart disease.

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Tweeted by @HealthNewsRev

Twitter as predictor of heart attack? Not so fast. Read more than 140 characters & learn. healthnewsreview.org/2015/01/hiding…

http://www.healthnewsreview.org/2015/01/hiding-the-rage-when-reading-twitter-knows-when-youre-going-to-have-a-heart-attack/

“Associated with” is really important here.  You can’t make that mean something it doesn’t mean.  It doesn’t mean “can better predict.”  It means there’s a statistical association.  Not proof of predictive power.

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[guess]

Very good Surveillance Law overview on Coursera.  Free, not much time investment per week.

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Tweeted by @SusannahFox

"Find your people"
https://medium.com/@SusannahFox/find-your-people-8129c581c108

The only way they learn about these innovations and this research is by connecting with other people who have Moebius. And the only way they’ve been able to do that is by coming to these events or by connecting online.

Never has it been so easy to collaborate, to compare notes, and to solve problems together.

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Tweeted by @BBCWorld

"Child watch: The apps that let parents 'spy' on their kids"
http://www.bbc.com/news/technology-30930512?ocid=socialflow_twitter

TeenSafe can work as a personal CIA spy for parents.

The company urges parents to tell their children they are being monitored, but the app can work covertly and show what kids are posting on social media as well as deleted texts and messages sent via popular apps such as Kik, WhatsApp and Snapchat.