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Who uses Twitter?
Academics, Doctors, Researchers, Patients, Journalists, Students, Artists, Designers, Politicians, the President and the First Lady.
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.
social sharing and privacy are not the same thing
It’s up to us to set the boundaries of what we talk about.
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.
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
What should we tell patients about sharing their story? Do we need their consent if the story is not recognisable to others?
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!
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.
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.
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.”
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
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
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.
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.
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?
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.
My favourite slide in minicourse M5 on radical change:"Collaborating in a social era" via @oscarberg #IHI26Forum pic.twitter.com/R6r5epfuTw
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.
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.
"Story becomes the ground that patients & healthcare professionals travel together." @JBaruchMD #hcsmca Wed 1pm ET wp.me/p12yz4-Kd
How has social media changed the way we share our illness stories?
Learn about what works for online community management by watching video by @colleen_young on my blog: buff.ly/1zyQ945
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.
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.
my disease is not a punch line
finding a community of people who "get it"
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.
In writing and sharing comes healing
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
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
I think it's at gatherings like this that where we really start acknowledging patients, taking them seriously
I have not viewed the internet as a huggable situation
“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.
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.
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.
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.
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.
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.
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.
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.
Twitter as predictor of heart attack? Not so fast. Read more than 140 characters & learn. healthnewsreview.org/2015/01/hiding…
“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.
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.
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.
I have already blogged about the benefits of social media, so I won’t do that here, instead I will show (1) how social media at conferences, using Twitter as an example, can be used effectively.
If I said something dumb in my Blogspot days — which I did, constantly — it hurt me. If I say something dumb today — which I do, but hopefully less constantly — it hurts my writers, and my editors, and my company. My voice needs editing. The cost of being unedited is too high.
The need to create content that "travels" is at war with the fact that great work often needs to be rooted in a particular place and context — a place and context that the reader and the author already share.
The study, called “Reexamining Health Messages in the Digital Age: A Fresh Look at Source Credibility Effects,” is much more interesting than its title might suggest. Authors Ioannis Kareklas, Darrel Muehling, and T.J. Weber looked at how online commenters influenced people’s responses to vaccination PSAs. Their conclusion? Commenters perceived as credible “are instrumental in influencing consumers’ responses.”
All it takes, however, is one friend-of-a-friend who knows someone who works with a client , and blammo, Bill is blackballed. Just one screenshot is required for hell to break loose, and again, I’ve seen “private” social media statuses go public faster than one can say “privacy is relative.”
Is the social web just a matrix of empty shares, of hollow generosity? As Chartbeat CEO Tony Haile once said (on Twitter), there is "effectively no correlation between social shares and people actually reading." People read without sharing, but just as often, perhaps, they share without reading.
Hank, along with YouTube creators Bethany Mota and Glozell Green, interviewed the president
These questions were unflinching, unapologetic, and discussed without the manufactured “both sides” baloney so common in mainstream media.
The reaction to this by some of that same media was as predictable as it was maddening: disbelief and derision.
Right now there are real journalists reading this who are choking on their coffee at the use of the words “journalist” and “blogger” in such close proximity within the same paragraph.
We treat bloggers exactly as journalists and ensure that they too meet our guidelines but, since they are a different type of media, we look at them through a different lens and research each blogger who applies to ensure they qualify.
Disappointing. Guideline writers must not use #hcsm MT @cmaer: Am. Ob/GYN society SM guidelines put liability 1st
bit.ly/15PHykG
Some physicians are reluctant to engage in online communication with their patients or their communities because of concerns about liability and privacy laws.
the question of how physicians and the health care system should interact with patients’ personal digital and social profiles remains unsettled. Some professionals advocate for surveillance as a form of prophylaxis against catastrophic events, such as suicide, while others prefer to exercise their own discretion in interacting with patients in social environments, including online settings
Dr Kate Granger, a 31-year-old hospital consultant, started the "Hello my name is..." campaign while she was being treated for cancer.
The doctor who informed her that her cancer had spread did not introduce himself to her and did not look her in the eye.
#hellomynameis on Twitter
But the study calls into question the standard methods many companies, hospitals and government agencies currently use to anonymize their records. It may also give ammunition to some technologists and privacy advocates who have challenged the consumer-tracking processes used by advertising software and analytics companies to tailor ads to so-called anonymous users online.
Mr. Blair recommends that account holders guard against such problems by spelling out in estate-planning documents how they want all their digital data treated, limiting access to sensitive accounts.
Twitter’s partnership with Google will allow tweets to show up in search results as soon as they are posted giving real-time marketing a new meaning.
Twitter starting rolling out group Direct Messages that allow you to chat with up to 20 people without necessarily following each other
Researchers have detailed the privacy hurdles people face while navigating in the information age, and what should be done about privacy at a policy level, in a new review.
Using Twitter can help physicians answer health queries from their patients in a better way, say researchers from University of British Columbia (UBC).
The study found that more and more health care professionals are embracing social media.
If the person chooses to share your words, you are (for all intents and purposes) writing to whoever they show your words to. Thus, you are (potentially) writing to the whole world. Consequently, you have to carefully think about what you say when you post something online.
I am posting this because I want people to know that there is a real person sitting on the other side of the screen.
revealing information related to patient care on social media in a manner that is technically HIPAA compliant, yet is ethically questionable
Although the student’s description of events preserves the patient’s anonymity, there is a conspicuously judgmental and disdainful tone to the posting that could influence public perception of the medical profession and medical education.
Even without the threat of identifying the patient, the reproduction of intimate aspects of a patient’s life—shared in confidence—on a student’s personal Facebook account is a practice that can undermine patients’ and family members’ expectations of privacy.
potential issues as doctors learn to manage the boundaries of public dialog
Unless it’s a patient’s wish to have his story disclosed, the reality is that many of our most powerful experiences will remain nothing more than our own.
Patients rightly assume that their conversations with healthcare providers are confidential, and while there’s an implied consent that relevant information may be noted in the medical record, no one expects a rendition of a seemingly privileged conversation to appear in a magazine or newspaper article.
there remains a niggling sense that maybe I shouldn’t be exposing the inner lives of my patients, that even with a patient’s okay, even after a careful resection of sensitive elements, I may have taken advantage of a confidence
There’s value in real stories, and if doctors are careful and respectful, there are ways to write essays about patients. But sometimes, the truth can emerge more clearly—and more kindly—through the prism of fiction.
Sure we can pass along the flashy tweets about the latest smart diaper.
A voice is worthless unless you use it for good. What are your tools? What are your opportunities?
Social Media in Real Life! :-))
the young man is now under $150,000 bail for terroristic threats, aggravated harassment and possession of a weapon and drugs, so clearly the NYPD is not smiling. The arrest came, as if on cue, after a Mashable article wondered if emoji could legally constitute a threat of actual violence.
Emoji lend emotional context to otherwise expressionless texts, but they also require context in order to be read.
the real money’s in the stories
he suggested that doctors should offload the responsibility to do these "more mundane aspects of care" to the patients
His post created a lot of controversy prompting Medscape to take down all of the comments.
Here is the #hcsmca Transcript from the epic chat 235 embed.symplur.com/twitter/transc…. All transcripts here docs.google.com/spreadsheets/d…
I also began to marvel at the disconnect between the severity of the crime and the gleeful savagery of the punishment.
The people I met were mostly unemployed, fired for their transgressions, and they seemed broken somehow — deeply confused and traumatized.
Ignominy is universally acknowledged to be a worse punishment than death
Social media is so perfectly designed to manipulate our desire for approval
"Twitter is as serious or superficial as we make it." @nprscottsimon on tweeting from his dying mother's bedside. opinionator.blogs.nytimes.com/2015/03/28/twe…
The 140 characters I thumbed out on my iPhone gave me the distance and focus to help me mark the hours and try to explore and express my emotions, to myself and for others.
I also heard from a few who said they had squirmed to read them, that I had violated my mother’s privacy, or who seemed to resent all the attention to her death.
Check out some of the #hcldr tweets from this past week - MDs & #SoMe w/ @Doctor_V
Via @Colin_Hung bit.ly/1DRBPs2
I’ll open with a little background on social health and how it’s redefining the role of the physician. I’ll then transition into some of the challenges and questions that physicians face including transparency, boundaries of the doctor/patient relationship and the moral obligation to participate.
Twitter is a rare case: it has arranged to archive all of its tweets at the Library of Congress.
For the law and for the courts, link rot and content drift, which are collectively known as “reference rot,” have been disastrous.
The Library of Congress has something like an opt-in policy; the Internet Archive has an opt-out policy. The Wayback Machine collects every Web page it can find, unless that page is blocked
Having had the disease for many years, I was able to offer her the insight and support that her doctors and other healthcare professionals simply could not.
As patients, we realise that many health professionals have yet to embrace the powerful tools that Twitter, Facebook, Instagram, and other social media platforms have created. Most doctor’s offices are busy, understaffed, and view social media as a distraction.
@AllergyKidsDoc says Twitter's limited characters has made him a better communicator and physician! #AAAAI15
Follow others that you want to emulate and compliment by retweeting or crediting them. #AAAAI15
What Musicians Can Teach Doctors, And How Allergists Are Like Rock Stars #AAAAI15 bit.ly/H40Fbj
Here is how to facilitate the Rise of the ePhysican who works hand in hand with the ePatient
“I will listen more than I will speak.” Because that’s what patients do, right? I had the distinct feeling that I would be an intruder in a place where patients don’t belong
The comment blossomed into a near-unprecedented career opportunity for a student who just recently turned 26 years old, and who remains a year away from earning his doctoral degree.
Organizers say it will almost certainly be the first paper at the prestigious Brookings Papers on Economic Activity that was commissioned based on a blog comment.
Remember that Twitter can be used for many things. In my world, Twitter is used to filter information from smart, resourceful people. For others, however, Twitter is a cocktail party or a convo tool.
The superficial and fast paced nature of social media is not amenable to nuances and subtleties. Disagreement with the groupthink on one specific topic can therefore get a person labeled
Phenomena such as cyberbullying, “Facebook depression,” sexting and exposure to inappropriate content are all issues about which pediatricians are uniquely positioned to educate patients and their families.
I speak to hundreds of doctors every year who don’t yet see the value of social media in the healthcare setting.
Perhaps in the coming years, when payment isn’t tied to the number of patients seen, communicating with patients can be emphasized, whether it’s through a phone call, email, or social media.
Kevin Vicker, who handles social media for the National Stroke Association (NSA), told Healthline that the importance of drawing a line between medical advice and non-clinical information and support is an issue on their Facebook page as well.
More than 40 percent of people also said they would consider information obtained on social media when choosing a doctor, hospital, or other medical facility, according to Demi & Cooper Advertising DC Interactive Group.
The healthcare conversation is no longer a one-way narrative but is evolving into a global, participatory discussion.
The role Twitter plays in breaking down patient/provider barriers, disseminating and expanding the reach of healthcare information, widening social networks and co-creating a collaborative model of shared health information is for me one of the most exciting developments in social media.
The medical chart becomes the official story and the doctor the teller of the patient’s story. What happens when the patient narrative doesn’t match the physician’s version?
Our blogs offer healthcare professionals a unique glimpse into the window of the lived experience of illness. Reading them, you will find grace, humour, persistence, and courage in the face of fear, grief, anger, pain, fatigue, and loss.
Lisa was pulled onto the national stage in January 2014 when Emma Keller, then a contributor to the Guardian, and Keller’s husband Bill, then an op-ed writer at the New York Times, wrote a pair of bruising columns about her. Emma criticized Adams for oversharing, and Bill suggested she give up non-palliative treatments. Their harsh treatments created an uproar, and also highlighted sensitive issues relevant to detailing health information on the Internet, medical journalism and goals of cancer care.
A group of lung cancer survivors was chatting online last May about what they thought was a big problem
She knew this was usually a task for professionals, but decided to go for it anyway.
Newman called on the expertise of current and former online community members.
Newman says she's usually pretty cynical about the ability of an individual or small group of patients to make a difference, but that this victory has changed her thinking.
When I went online and started searching on Twitter, I could see what moms were doing to each other.
You have created a model on how you can not only provide such great patient care but also have an impact at a much bigger level through the tools that we have today that were not available in any significant way 5 or 7 years ago.
Stanford Medicine X and Symplur are pleased to announce a joint initiative designed to spark scholarly research activity in healthcare social media.
Proposal submissions begin February 10 and end March 15 2015.
One can almost observe that when traditional communication hierarchies are flattened, which they are in social media, very deep conversations take place between stakeholders, and MedicineX takes this to the next level.
As an early adopter, my personal reflection on social media is finely balanced. The benefits of knowledge, communication and reach are clear. But the nebulous areas of professionalism, clinical excellence, content, time, distractions and need confuse me.
Don’t listen to the healthcare social media flavor of the month … because here are …
3 Reasons Healthcare Social Media is a Bad Idea for the Average Practicing Doctor
I believe that ineffective communication is at the heart of many issues today, including some of healthcare's major pain points, such as patient engagement, health literacy and physician effectiveness.
Observable on social media is people's context and perspective, their priorities, interests and reasons for engaging in their health (or not). Likewise patients' unmet needs, tips about better ways to communicate with them, and insight into how great the burden of chronic lifelong disease is on patients and their families are all laid out vividly on social media, especially in the healthcare Twitterverse.
There is a lot of nuance to a successful defamation claim, but I always caution people that just because you’re in the right at the end of the day, it doesn’t mean someone can’t drag you into court.
He also found evidence that health search terms he tried — herpes, cancer and depression — were shared by seven sites with outside companies.
A five-minute session on the the wrong network can compromise e-mail credentials, bank accounts, credit card information, and other private accounts.
In fact, we are getting shortchanged twice: first, when we surrender our data – eventually, it ends up on Google’s balance sheet – in exchange for relatively trivial services, and, second, when that data is then later used to customise and structure our world in a way that is neither transparent nor desirable.
If it’s on your mind, consider some of the thoughts and ideas we discussed here—how to best spend your time, the benefits of saying no, taking a lean approach to social, and more. Social media has tons of advantages and uses when applied in the right way—and the right way so very often comes down to what feels right to you.
What becomes clear after a few years of having a large social network is that people are desperate to be heard.
The fact is, online celebrity is just a simple reflection of the existing networks of privilege that confer benefits on people in every other realm of life.
I have “hired” about 400 people on Twitter to bring me the information that is important to me.
When I show colleagues a new study, sometimes they look at me as if I am exceptionally well-read. “Gosh, John, you sure do read a lot.” What they don’t know (yet) is that the people I have chosen to follow on social media brought this study to me.
Its newly-revealed Project Lightning, BuzzFeed reports, will be the core feature of Twitter going forward: a button in the living center of its mobile app’s menu bar, dedicated to providing useful information in real time.
In the Reputation Economy, speed, bloviation, and #engagement are prized far above the actual dissemination of useful information.
User contributions in the form of posts, comments, and votes are essential to the success of online communities. However, allowing user participation also invites undesirable behavior such as trolling.
One fantastic opportunity that social media affords endocrinologists is the ability to "learn from our patients," said Dr Kar.
If you are following the right people you will learn a lot of things
Of course there are risks, he said, such as the urge to get too involved, to give clinical advice, or express opinions that are too personal.
It’s no secret that people on the Internet can be mean. That’s an unfortunate fact of online culture: when you give people anonymity, they often feel free to say whatever they want with no regard for how it may affect others. After all, when you’re just typing words into a machine, it’s easy to forget that there are real people reading those words on the other side of the screen.
We also know that MedX is the perfect space for this type of nuanced dialogue, as it draws a passionate crowd of doers and dreamers.
This is just the first post in a series leading up to the panel itself, and we want to know what your thoughts are on the intersection of privacy of innovation.
Colleen Young @colleen_young · Jul 15
Transcript of #hcsmca chat 228: [url]http://embed.symplur.com/twitter/transcript?hashtag=hcsmca&fdate=07%2F15%2F2015&shour=10&smin=00&tdate=07%2F15%2F2015&thour=11&tmin=15[/url] … What's Your Relationship w/ Privacy?
When I give a patient the ability to connect with me online, I become accessible to them in a way that may not have been possible in recent years.
My participation on Twitter is a part of my personal and professional life that I hope has humanized me, “the surgeon,” in a way that is positive and engenders confidence.
Doctors who treat children with rare conditions sometimes seek guidance from online chat groups where families relate their experiences with the disorders.
Some patient-advocacy groups have had their collected experiences published in a scientific journal to lend greater scientific weight to the findings.
John Oliver did a typically brilliant report on all this for his show Last Week Tonight on HBO on Sunday.
Glenn Greenwald was one of the first reporters to see — and write about — the Edward Snowden files, with their revelations about the United States' extensive surveillance of private citizens. In this searing talk, Greenwald makes the case for why you need to care about privacy, even if you’re “not doing anything you need to hide."
We’re now seeing a migration from relatively segregated Patient-Patient and Doctor-Doctor communities to online communities where both mingle freely, sharing and learning together. One of the most fascinating places to map that circumstance is on twitter, where the study of direct conversations between doctors and patients can be visualized to help us understand how those networks function.
We believe that to mobilise the energy of these collective voices, we need a space where people come together with equal status and in a space where we remove the staff and patient dichotomy, enabling everyone to have their say.
New research suggests that employees with a diverse Twitter network — one that exposes them to people and ideas they don’t already know — tend to generate better ideas.
The Secret Service Internet Threat Desk: their jobs is to read the comments. Pray for them. theatlantic.com/technology/arc…
A team tasked with protecting the president of the United States is constantly sifting through hateful online comments to find would-be assassins or terrorists.
In a recent decision for the case Elonis v. United States, about a man accused of threatening his wife on Facebook, the Supreme Court avoided establishing any clear test for how to identify true threats online. Their decision to dodge the issue leaves not just the Secret Service but everyone who is the victim of online harassment to figure out how to draw the line between true threats and free speech on the Internet.
By tweeting, you are entering the Wild West of social media
Tweeting isn’t a strategy of risk minimization for sure!
by following interesting people who make thoughtful comments and link to interesting articles, I learn a great deal that might otherwise pass me by
@colleen_young WTF is right, Colleen. It's a post by surgeon @HopeAmantine kevinmd.com/blog/2015/07/a… Now she says: Just kidding! @AliceDreger
My attending asked, “Why are you being so dainty with your dissection there?”
He took his scissors and incredibly, before my eyes, and with no warning or preparation of any kind, cut a one-inch hole in the cava.
Is @HopeAmantine what happens when docs use pseudonyms? e.g. "Should Doctors Use Their Real Names on Social Media?" ethicalnag.org/2013/05/10/ano…
let us remember the wisdom of Dr. Farris Timimi, Medical Director of the Mayo Clinic Center for Social Media
His brilliant 12-word social media guide for health care professionalism is:
“Don’t Lie, Don’t Pry, Don’t Cheat, Can’t Delete, Don’t Steal, Don’t Reveal”
It’s also impossible not to note that it was only after the criticism came raining down on her on Twitter did Dr. Amantine claim that the story was fictional. Maybe it was fictional (it does have the air of being apocryphal about it), but if it was fictional she sure didn’t give any indication until after the shitstorm got really intense. Then she deleted her blog (which is gone as of this writing, as is her Twitter account).
You wrote that the couch opens people up as opposed to their sitting in a chair facing you.
Free association is the procedure in which the patient says everything that comes to mind—without censoring, without filtering, and without judgment.
What is most important is to create a safe space
WE search for doctors at 8:20 a.m., recipes at 4:52 p.m. and enlightenment at 3:16 a.m. So far, the Google data that analysts have worked with has been daily, weekly or annual, but Google recently released the same anonymous, aggregate data down to the minute.
For a while, it really felt like brands were beginning to embrace online communities as a way to directly connect with people as human beings. But over the years, that idealistic vision of genuine two-way exchange eroded.
Twitter's Dick Costolo recently said that ads will "make up about one in 20 tweets."
Medicine is not social media... medical problems cannot be solved in 140 character / seconds or less.
But what about with a fancy website that has dozens of testimonials and a long list of research 'publications'? twitter.com/PAallergy/stat…
@AllergyKidsDoc Yes, it really says something when, as healthcare professionals, we have to compete with social media outlets
@AllergyKidsDoc which is why you should get MEDICAL ADVICE from 'the pro's", and recipes/memes/puppy fotos/restaurant info on Facebook
Tweeted by @trishgreenhalgh
"Six ‘biases’ against patients and carers in evidence-based medicine"
[url]http://www.biomedcentral.com/1741-7015/13/200[/url]QuoteExamples from these studies included doctors dismissing symptoms that were not explained by blood tests, ignoring patient experience that did not correspond to textbook descriptions, using medical jargon to re-establish a position of power, and actively withholding information or services. Patients learnt to conceal their own expertise and treatment decisions in order to comply with medical expectations and to avoid professionals becoming “patronizing or angry” [50], [51]. All these might be considered as examples of what has been called ‘epistemic injustice’ – that is, the numerous and often subtle ways in which patients may be dismissed in their specific capacity as knowers [52].QuoteHerein lies a paradox: clinician-researchers are building an experimental science of how they can intervene in patients’ illnesses [84], while patients themselves are building collaborative communities aimed at supporting and informing one another
Cool! Future? Twitter discussions on med topics being published in medical journals. @LancetRespirMed @drstanbrook twitter.com/ATS_BSHSR/stat…
We had the pleasure of discussing the ViDiCO trial1 with the lead author Adrian Martineau at our Twitter-based journal club on May 28, 2015. ViDiCO assessed whether vitamin D supplementation reduced the incidence of moderate or severe exacerbations and upper respiratory infections in patients with chronic obstructive pulmonary disease (COPD) versus placebo.
Join us for our next ScioDC event on Wednesday July 22 at 6 PM as we discuss the opportunities and pitfalls of being a scientist on social media who works for a federal agency
Looks like the "muzzled scientist" emoji is quite timely... @picardonhealth ottawacitizen.com/news/local-new… twitter.com/VanObserver/st…
Muzzled Scientist: This emoji is useful for scientists or researchers who have made important discoveries in the name of science or history but are not permitted by the federal government to speak freely about them. Use at your own risk.
No scientist paid with public funds should be compelled to filter the information they collect away from the public simply to keep our politicians happy. We all have the right to decide for ourselves what information is of value. That our government appears to be working so very hard to keep information from us should be deeply troubling to all Canadians who value their democracy and the roles of our institutions within it.
While providers may be supportive of social media as a tool for patients to build communities, reduce isolation and expand their support networks, concerns have also been raised.
Some physicians are worried that the opinions of a vocal minority on physician rating sites could impact their practices.
Others are more apprehensive about the creation of the "expert patient."
Sing it, @ArthurCaplan ! "Are Evil People Influencing Your Patients?" medscape.com/viewarticle/84… We must curate health info, we must be online
Belle, an Australian woman somewhere in her 20s (she doesn't even tell the truth about that), had a very active website where she claimed that she had beaten multiple forms of cancer by eating right and living healthy.
But Belle did not have cancer and she was full of malarkey.
It is time for doctors to get into this with their patients. You need to ask them what they are looking at on social media.
Do your docs know about your online activities? Do you talk about it or is it kind of a forbidden topic?
Connection is why we're here. It's what gives purpose and meaning to our lives.
I know that vulnerability is kind of the core of shame and fear and our struggle for worthiness, but it appears that it's also the birthplace of joy of creativity of belonging of love and I think I have a problem
In a recent study published in the Journal of General Internal Medicine, almost 20 percent of patient respondents reported trying to contact doctors through Facebook, and almost 40 percent through email.
I may pop in from time to time
And so it is with health systems—the villain is us, the clinicians and managers. It is us who, in our hearts, don’t want those patients to begin barking, to engage with each other, to hunt in packs.
Along comes social media. Suddenly the dogs are barking and the patients are talking together anyway, about all kinds of stuff—including us.
In most cases, parents and children agreed — don’t text and drive; don’t be online when someone wants to talk to you. But there was one surprising rule that the children wanted that their parents mentioned far less often: Don’t post anything about me on social media without asking me.
our children will grow into teenagers and adults who want to control their digital identities
Among my many fave @jonronson lines: "We tend to relentlessly define people by the worst mistake they ever made."
But when something hits a core trauma – I actually got really retriggered.
The reason why she finally agreed to meet me, despite her anxieties, is that the Guardian is highlighting the issue of online harassment through its series The web we want – an endeavour she approves of. “Destigmatising the shame around online harassment is the first step,” she says. “Well, the first step is recognising there’s a problem.”
she’s a respected and perceptive anti-bullying advocate
I think he was addressing one of our most fundamental needs: The need to share our experience with others.
I’d say this single, simple act lies at the heart of our closest relationships.
We all understand, after all, how much it can help simply to be heard.
Concerns over online health information–seeking behavior point to the potential harm incorrect, incomplete, or biased information may cause.
Conclusions: Most of the information assessed in this study was considered by qualified medical doctors and nonmedically qualified respondents to be of reasonably good quality. Although a small amount of information was assessed as poor, not all respondents agreed that the original questioner would have been led to act inappropriately based on the information presented. This suggests that discussion forum websites may be a useful platform through which people can ask health-related questions and receive answers of acceptable quality.
They say that Wikipedia is NotTherapy. It’s a serious place to write an encyclopedia, not to iron out one’s mental kinks or cracks. But I think that’s wrong. No one knew me on Wikipedia, except for my words, the wisdom of my input, and the value of my contributions. They couldn’t care less if I was manic, phobic, delusional, or hysterical.
We need to be kind. This is a higher calling than civility, and entirely compatible with achieving our goals.
I love social media. But somehow we have to help create better mechanisms in it to distinguish between fact and falsehood. No matter how passionate people are, no matter how cleverly they can blog or tweet or troll, no matter how viral things get, lies are still lies.
Wait. Did he just say what I think he said?
Sermo listens to physicians conversations to mine business and competitive intel?
Who benefits from social media engagement in medicine? To what extent does it help form communities of practice, help patients feel less isolated, and unite caregivers and researchers in the common goal to improve health and cure disease? How might social media be used for medical education? What risks to patient privacy and health care might social media use impose? Who, if any, are being left out of these conversations?
Broad Institute/Dana-Farber Integrative Cancer Biology Program in Cambridge, Massachusetts, formed the Metastatic Breast Cancer Project to find a long tail solution: Find people on the Internet. "The traditional way is that when a patient is at [a research] institution, someone will approach them and ask them in person," says Wagle. "We're trying to complement that by doing this 21st century, go directly to patients."
The community is small but dedicated, and it provides an empathy that the rest of the world can't muster.
"People in real life don't really want to know what's going on. They don't want to hear anything other than, 'Life is great! My loved one is so sweet and I love being able to care for them! What a blessing!' The minute you voice the truth, people get uncomfortable."
Hello, my name is Kate Granger and I'm the founder of the #hellomynameis campaign.
I'm a doctor, but also a terminally ill cancer patient. During a hospital stay in August 2013 with post-operative sepsis, I made the stark observation that many staff looking after me did not introduce themselves before delivering my care. It felt incredibly wrong that such a basic step in communication was missing. After ranting at my husband during one evening visiting time he encouraged me to "stop whinging and do something!"
We decided to start a campaign, primarily using social media initially, to encourage and remind healthcare staff about the importance of introductions in healthcare.
“But I haven’t found the real story yet; I’m still gathering string,” my friend told me, invoking an old newsroom term to describe the first stage of reporting, when you’re looking for something that you can’t yet name. Later that night, as I walked home from the bar, I realized “gathering string” is just another way of talking about super-encountering. After all, “string” is the stuff that accumulates in a journalist’s pocket.