"#Cancer: Researchers Are Conducting Huge Studies Using Twitter, Facebook"
http://www.fastcompany.com/3058311/cancer-researchers-are-conducting-huge-studies-using-twitter-facebook

QuoteBroad 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."

---

https://m.youtube.com/watch?v=rnPGdjRIyHA&feature=youtu.be


----------------------


"Caregiver Forums Are Depressing, But They're Supposed to Be Depressing"
http://www.vice.com/read/caregiver-forums-are-depressing-but-theyre-supposed-to-be-depressing

QuoteThe community is small but dedicated, and it provides an empathy that the rest of the world can't muster.

Quote"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."

----------------------


http://hellomynameis.org.uk/home

QuoteHello, my name is Kate Granger and I'm the founder of the #hellomynameis campaign.

QuoteI'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.

----------------------


"How to Cultivate the Art of Serendipity"
http://www.nytimes.com/2016/01/03/opinion/how-to-cultivate-the-art-of-serendipity.html?smid=tw-nytopinion&smtyp=cur

Quote"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.

"Bile, venom and lies: How I was trolled on the Internet"
https://www.washingtonpost.com/opinions/bile-venom-and-lies-how-i-was-trolled-on-the-internet/2016/01/14/62207a2c-baf8-11e5-829c-26ffb874a18d_story.html

QuoteI 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.

---------------


The Twitter Chat that Killed Sermo | #MedDevice
http://medicalmarcom.com/medical-device-marketing/twitter-chat-that-killed-sermo-meddevice/

QuoteWait. Did he just say what I think he said?
Sermo listens to physicians conversations to mine business and competitive intel?

---------------


"Stanford Medicine X and Symplur announce an Everyone Included™ social media research challenge"
http://medicinex.stanford.edu/2016/05/17/symplur-research-challenge-2016/

QuoteWho 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?

Tweeted by @bigthink


"When You Feel Like You Have No One to Talk To, It May Be You Do"
http://tinyurl.com/grc2daj

QuoteI 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.

QuoteWe all understand, after all, how much it can help simply to be heard.

-------------------------------------



Tweeted by @bengoldacre


"Health Advice from Internet Discussion Forums: How Bad Is Dangerous?"
http://www.jmir.org/2016/1/e4/

QuoteConcerns over online health information–seeking behavior point to the potential harm incorrect, incomplete, or biased information may cause.

QuoteConclusions: 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.

Reminder - get your medical advice from docs. 

Rhetorical ? - Do I also see value/benefits in using forums?


-------------------------------------



Tweeted by @hildabast

"Journey of a Wikipedian"
https://medium.com/@jakeorlowitz/journey-of-a-wikipedian-c2890e3a8d0c#.dqlykswoi

QuoteThey 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.

QuoteWe need to be kind. This is a higher calling than civility, and entirely compatible with achieving our goals.

Tweeted by @LisaRosenbaum17

QuoteAmong my many fave @jonronson lines: "We tend to relentlessly define people by the worst mistake they ever made."

---


Monica Lewinsky: 'The shame sticks to you like tar'
https://www.theguardian.com/technology/2016/apr/16/monica-lewinsky-shame-sticks-like-tar-jon-ronson?CMP=twt_gu

QuoteBut when something hits a core trauma – I actually got really retriggered.

QuoteThe 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."

Quoteshe's a respected and perceptive anti-bullying advocate

---


The Web We Want
https://www.theguardian.com/technology/series/the-web-we-want

"Don't Post About Me on Social Media, Children Say"
http://well.blogs.nytimes.com/2016/03/08/dont-post-about-me-on-social-media-children-say/

QuoteIn 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.

Quoteour children will grow into teenagers and adults who want to control their digital identities

Quote from: LinksEtc on August 31, 2015, 11:10:51 AM
I may pop in from time to time

yeah,   


-----------------------



Tweeted by @paulhodgkin

"Paul Hodgkin: The dogs that don't bark are the most difficult to hear"
http://blogs.bmj.com/bmj/2016/04/18/paul-hodgkin-the-dogs-that-dont-bark-are-the-most-difficult-to-hear/

QuoteAnd 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.

QuoteAlong comes social media. Suddenly the dogs are barking and the patients are talking together anyway, about all kinds of stuff—including us.

Links, I just wanted to let you know how much I've appreciated you!  Keep in touch! 

I created "Links" for the sesame labeling effort and my part in that feels done.


Soooo, letting go of "Links" is not an easy thing to do. I think with SM, there are often kind of life cycles ... you have a purpose, you have an online id, and it kind of runs its course.  Like with Boo ... she was here, she was FAB, and then she seemed "done".

I'm not going to delete "Links" in case I have to edit, or in case somebody wants to contact me or needs my help, but taking a small break has reinforced that "pretty much done feeling" that I was having before.



Many 

.

This seems like a nice thing to wrap this thread up a bit ....


"Brené Brown: The power of vulnerability"
https://www.ted.com/talks/brene_brown_on_vulnerability#t-834007


3:18

Quote
Connection is why we're here.  It's what gives purpose and meaning to our lives.

12:38

Quote
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

--------------------------------



"Why Your Doctor Won't Friend You On Facebook"
http://www.npr.org/sections/health-shots/2015/08/25/434604425/why-your-doctor-won-t-friend-you-on-facebook?utm_campaign=storyshare&utm_source=facebook.com&utm_medium=social

QuoteIn 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 "get it" ... I think most FASers "get it" ... why FB would generally not be a good idea, but

I think this may be another case of "the curse of knowledge" ... docs are trained as to what is considered appropriate wrt doc-pt relationships ...

most patients aren't ... lots of people "friend" almost anybody they have a relationship with ... it probably feels quite natural to some people ... cool, my doc is on FB.

I think patients could use a little education/guidance.

I only use Facebook as an investigation tool, so bear in mind I don't use it as social media.  These are some links from a criminal investigation training on Facebook.  The take away here is Facebook's facial recognition surpasses public sector ability because people upload pictures from multiple angles (as opposed to a single, straight on ID photo).  Ears tend to be a unique characteristic so the combination of the multiple angles, ages, lighting and ears, and the disclosure of your contacts helps identify people who may not even be posting pictures of themselves on Facebook.

http://www.extremetech.com/extreme/178777-facebooks-facial-recognition-software-is-now-as-accurate-as-the-human-brain-but-what-now

http://www.theverge.com/2014/7/7/5878069/why-facebook-is-beating-the-fbi-at-facial-recognition

http://www.theverge.com/2014/3/17/5518808/facebooks-working-on-facial-verification-thats-nearing-human-levels

"Healthcare social media: What's in it for patients?"
http://www.medicalpracticeinsider.com/best-practices/healthcare-social-media-whats-it-patients

Quote
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."

---------------------------------------------



Tweeted by @SeattleMamaDoc

QuoteSing it, @ArthurCaplan ! "Are Evil People Influencing Your Patients?" medscape.com/viewarticle/84... We must curate health info, we must be online

Medscape Business of Medicine > Ethics: Today's Hot Topics
Are Evil People Influencing Your Patients?
Arthur L. Caplan, PhD
Disclosures June 24, 2015

(I don't link to medscape - privacy reasons - but you can google)

QuoteBelle, 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.

QuoteBut Belle did not have cancer and she was full of malarkey.

QuoteIt is time for doctors to get into this with their patients. You need to ask them what they are looking at on social media.

---------------------------------------------



Re: Living with Food Allergies, 2013 and on

Quote from: LinksEtc on August 01, 2015, 04:55:49 PM
Do your docs know about your online activities?  Do you talk about it or is it kind of a forbidden topic? 

Tweeted by @ScioDC

"ScioDC #11: The Powers and Limitations of #socialgov: Social Media and Government Scientists"
http://dc.scienceonline.com/2015/07/06/sciodc-11-the-powers-and-limitations-of-socialgov-social-media-and-government-scientists/

QuoteJoin 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

--------------------------------------



Tweeted by @DrRitaMc

QuoteLooks like the "muzzled scientist" emoji is quite timely... @picardonhealth ottawacitizen.com/news/local-new... twitter.com/VanObserver/st...

---


"Our own emojis, designed for life in Ottawa"
http://ottawacitizen.com/news/local-news/our-own-emojis-designed-for-life-in-ottawa

QuoteMuzzled 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.

---


"Another federal scientist fired in Harper's ongoing war on science"
http://www.nationalobserver.com/2015/07/20/opinion/another-federal-scientist-fired-harpers-ongoing-war-science

QuoteNo 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.

--------------------------------------



"The nerd's guide to learning everything online"
http://www.ted.com/talks/john_green_the_nerd_s_guide_to_learning_everything_online


This talks about "communities of learners" ... I know that FAS is primarily a support group, but especially in the past, I have felt part of a "community of learners".   Thanks for that.   

Tweeted by @PAallergy

QuoteMedicine is not social media... medical problems cannot be solved in 140 character / seconds or less.

---

Tweeted by @AllergyKidsDoc

QuoteBut what about with a fancy website that has dozens of testimonials and a long list of research 'publications'? twitter.com/PAallergy/stat...

------------------------------------



Docs helping patients to surf the internet


------------------------------------



Tweeted by @KoontzOncology

Quote@AllergyKidsDoc Yes, it really says something when, as healthcare professionals, we have to compete with social media outlets

---

Tweeted by @Pmaxwellfnp

Quote@AllergyKidsDoc which is why you should get MEDICAL ADVICE from 'the pro's", and recipes/memes/puppy fotos/restaurant info on Facebook

------------------------------------


Re: Tweet response for @GilmerHealthLaw

Quote from: LinksEtc on June 06, 2015, 08:50:52 PM

Tweeted by @trishgreenhalgh

"Six 'biases' against patients and carers in evidence-based medicine"
http://www.biomedcentral.com/1741-7015/13/200

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

------------------------------------



Tweeted by @Asthma3Ways

QuoteCool! Future? Twitter discussions on med topics being published in medical journals. @LancetRespirMed @drstanbrook twitter.com/ATS_BSHSR/stat...

---

"Vitamin D supplementation in patients with COPD: Twitter discussions on behalf of the University of Toronto Respirology and Sleep Journal Club"

http://www.thelancet.com/journals/lanres/article/PIIS2213-2600(15)00284-2/fulltext?utm_content=buffere317e&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

QuoteWe 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.

"What's the Couch Got to Do With It?
The low-down on lying down on the couch in psychoanalysis."

https://www.psychologytoday.com/blog/headshrinkers-guide-the-galaxy/201404/whats-the-couch-got-do-it

QuoteYou wrote that the couch opens people up as opposed to their sitting in a chair facing you.

QuoteFree association is the procedure in which the patient says everything that comes to mind—without censoring, without filtering, and without judgment.

QuoteWhat is most important is to create a safe space

-------------------------------------



Tweeted by @ElaineSchattner


"Days of Our Digital Lives"
http://www.nytimes.com/2015/07/05/opinion/sunday/seth-stephens-davidowitz-days-of-our-digital-lives.html?smid=tw-share

QuoteWE 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.

-------------------------------------



Tweeted by @DrVes

"There Is No More Social Media -- Just Advertising"
http://adage.com/article/digitalnext/social-media-advertising/297841/?utm_content=buffer221df&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

QuoteFor 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.

QuoteTwitter's Dick Costolo recently said that ads will "make up about one in 20 tweets."