Docs helping patients to surf the internet

[LinksEtc]

Tweeted by @DrVes

"When Blogging Becomes a Slog"
http://www.nytimes.com/2014/09/25/garden/when-blogging-becomes-a-slog.html?_r=2

"If readers begin to suspect that your content is heavy on product placement, if they see excessive amounts of sponsored posts, you risk losing what's most important, which is trust and authenticity," said Ms. Kueber, who still relies largely on banner ads and has so far done only two sponsored posts.

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


Tweeted by @AllenFrancesMD

"Open disclosure: why doctors should be honest about errors"
https://theconversation.com/open-disclosure-why-doctors-should-be-honest-about-errors-4070

This is the gap between incidents that require disclosure and incidents that are disclosed. They conclude that consensus is forming that only around a third of incidents are disclosed.

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


Tweeted by @AmerMedicalAssn

"You're Probably Wrong About How Risky Your Prescriptions Are"
http://www.businessweek.com/articles/2014-09-26/youre-probably-wrong-about-how-risky-your-prescriptions-are

The lesson for all humans is to be better at math when making decisions.

[LinksEtc]

Tweeted by @99u

"Why Rumors Outrace the Truth Online"
http://www.nytimes.com/2014/09/30/upshot/its-so-much-more-fun-to-spread-rumors-than-the-truth.html?abt=0002&abg=1

the spread of rumors, misinformation and unverified claims can overwhelm any effort to set the record straight

The challenge for fact-checkers, it seems, is to make the facts as fun to share as the myths they seek to replace.

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


Tweeted by @Skepticscalpel

"Federal doctor ratings face accuracy, value questions"
http://www.usatoday.com/story/news/nation/2014/09/29/obamacare-doctor-quality-ratings-accuracy-delay-affordable-care-act/16278733/

The AMA says it favors the phased-in approach that limits the quality data available but says the CMS shouldn't add data until it fixes errors in the system.

Some consumer advocates suspect that undue influence by the powerful doctors' lobby has slowed the process.

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


Tweeted by @tessajlrichards

"Patient commentary: Consider the person alongside the pathology"
http://www.bmj.com/content/351/bmj.h4878

But, as I leave, I can't quite shake off the impression of being processed by an overloaded, technologically driven system in which patients are more pawns in the game than partners in care.

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


Tweeted by @amcunningham

@ePatientDave this is another of the 'just google it' stories..from @speccymcspec who spoke at #qubept twitter.com/speccymcspec/s...

"just google it"
https://memineandotherbits.wordpress.com/2015/09/16/just-google-it/

"Ah," said the GP, "I don't know anything about it. You may just google it."

But it didn't feel like he was giving us the power. It felt like he was washing his hands of us.

[LinksEtc]

"Sometimes the best care a patient can get is a discussion"
http://www.kevinmd.com/blog/2015/09/sometimes-the-best-care-a-patient-can-get-is-a-discussion.html

You began by kneeling on the ground so you could be level with Mr. K.

You took your time with the discussion. You did not appear rushed, distracted or uncomfortable. I think Mr. K recognized that his physician cared and had his best interest in mind.

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


Tweeted by @6s_EQ

"Shame–an Excruciating Place"
http://www.6seconds.org/2010/11/18/shame-an-excruciating-place/

While some of us may embrace our physical pain during a workout or marathon–most of us try to escape psychological/emotional pain.

Do members of our team courageously allow themselves to experience feelings of failure without blaming others, or rationalizing?  Can our team handle the pain of failure and learn from it?

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


Tweeted by @washingtonpost

"'Death doctor' who profited from unnecessary chemotherapy for fake cancers could resume practice in 5 years"
http://www.washingtonpost.com/news/morning-mix/wp/2014/10/01/death-doctor-who-profited-from-unnecessary-chemotherapy-for-fake-cancers-could-resume-practice-in-three-years/?tid=hp_mm&hpid=z3&Post+generic=%3Ftid%3Dsm_twitter_washingtonpost

This was a case of a doctor exploiting patients, using them as commodities in order to make money.

[LinksEtc]

Tweeted by @enriquegavilan

"The Connection Between Evidence-Based Medicine and Shared Decision Making"
http://tinyurl.com/kt7342p

Evidence-based medicine (EBM) and shared decision making (SDM) are both essential to quality health care, yet the interdependence between these 2 approaches is not generally appreciated. Evidence-based medicine should begin and end with the patient: after finding and appraising the evidence and integrating its inferences with their expertise, clinicians attempt a decision that reflects their patient's values and circumstances. Incorporating patient values, preferences, and circumstances is probably the most difficult and poorly mapped step—yet it receives the least attention.

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


Tweeted by @DrLeanaWen

TEDMED 2014: 'The future of medicine is in good hands'
http://thedo.osteopathic.org/2014/09/tedmed/

"On several websites, [her physician] was listed as a highly paid speaker to a drug company, and in fact, often spoke on behalf of the same chemo regimen that he had prescribed her," Dr. Wen said. "She called me in a panic, and I didn't know what to believe. Maybe this was the right chemo regimen for her, but maybe it wasn't."

[LinksEtc]

Tweeted by @rvaughnmd

"When medical care is delivered in 15-minute doses, there's not much time for caring"
https://www.washingtonpost.com/opinions/when-medical-care-is-delivered-in-15-minute-doses-theres-not-much-time-for-caring/2015/11/13/85ddba3a-818f-11e5-a7ca-6ab6ec20f839_story.html?postshare=9841447591359186&tid=ss_tw

But a hurried, task-oriented approach doesn't accommodate the meandering, overlapping, widening issues of patients. It undermines kindness.

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



Tweeted by @andrewallergy

"Back from the BSACI – Un-met need in allergy services"
http://whatallergy.com/2014-10/back-from-the-bsaci-un-met-need-in-allergy-services

This blog is my way of trying to make a difference. To fill that yawning gap before you get a diagnosis and afterwards. If I can help just a few people not to feel so alone by writing all these blogs then I have achieved something that wasn't there when I needed help.

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


Tweeted by @C3NProject

Participatory Design and the Making of Health: My TEDx Detroit Talk by @joyclee #allergy #design slideshare.net/joyclee/partic... via @SlideShare

http://www.slideshare.net/mobile/joyclee/participatory-design-and-the-making-of-health-my-tedx-detroit-presentation

[LinksEtc]

Tweeted by @tessajlrichards

"Shared Decision-Making Strategies for Best Care: Patient Decision Aids"
http://www.iom.edu/Global/Perspectives/2014/SDMforBestCare.aspx

In Shared Decision-Making Strategies for Best Care: Patient Decision Aids, the authors suggest concrete steps to fully integrate the ideals and practices of shared decision making (SDM) into routine clinical practice. The discussion paper, published by the Institute of Medicine (IOM), is a product of participants in the IOM's Evidence Communication Innovation Collaborative.

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


Tweeted by @ElaineSchattner

"Given Choice, Parents Pick Cheaper Medical Procedure for Children"
http://www.nytimes.com/2014/10/02/upshot/given-choice-parents-pick-cheaper-medical-procedure-for-children.html?smid=tw-share&abt=0002&abg=1

The study offers a compelling case for price transparency combined with medical consumerism as one strategy that could help reel in the nation's $2.8 trillion health care bill.

[LinksEtc]

Tweeted by @DrAndrewB

"Less is not always more: embracing (appropriate) medical intensity"
http://qualitysafety.bmj.com/content/early/2014/10/01/bmjqs-2014-003586.full#aff-2

Simplistic notions, such as doing more is better or doing less is better, have no role, either clinically or in the policy world. Figuring out who is likely to benefit from intensive therapy and who will do fine without is critically important—and not just for the bottom line. Indeed, patients' lives depend on it.

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


Tweeted by @Woodrumlaw

"Using Discovery to Identify "Anonymous" Online Tortfeasors"
http://www.compellingdiscovery.com/?p=2962

If your business is defamed online, how can you file suit against someone you only know as "MyLittleBrony524?"

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


"Decision Aids"
http://www.americanresidentproject.com/blog/decision-aids

Patient decision aids can take many forms – audio, visual, written, etc. – and are used to help inform patients about their medical options so that they can make educated choices about treatment. Although universal standards don't yet exist, several sources suggest that good decision aids convey information about all of the options available, explain the consequences of each choice and offer previous patients' experiences.

[LinksEtc]

Tweeted by @JBBC

"@KathEvans2: Transparency in sharing #ptfeedback shifts the culture and encourages staff to challenge themselves and each other #kindamagic

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


Tweeted by @clairem7523

One of the tools from #kindamagic today, I think a question we should ask every day #patientexperience pic.twitter.com/zdxCFGx2hn

https://mobile.twitter.com/clairem7523/status/518004273716940800/photo/1

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


Tweeted by @lucienengelen

"Please give me 36 seconds to tell my story"
http://mhealthinsight.com/2013/11/19/please-give-me-36-seconds-to-tell-my-story/

As for patients, when they're diagnosed with a critical or chronic illness, they don't get any time to practice. They get thrown into the game right away.

[LinksEtc]

Tweeted by @DrVes

Patients' search for online diagnoses not useful - Fewer than 5% of doctors felt it was helpful buff.ly/ZxV3mw

----

"Patients' online diagnoses not useful, say doctors"
http://www.bbc.com/news/technology-29458143?utm_content=bufferc193c&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

More patients are going to their GP and telling them what treatment they need based on information from apps and the internet, a survey has suggested.

A third of the UK physicians surveyed said patients would come with suggestions for what prescription they should receive.

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



Tweeted by @crashcoursestan


"Patients Bossing Doctors Around? It's a Myth: HCTriage News"
https://m.youtube.com/watch?v=ztFS23LtMzE

The myth of the demanding patient is more about our own responses and how lackluster communication skills can contribute to difficult situations that stick in our throats and our memories.

[LinksEtc]

Tweeted by @DrVes

"How con artists trick your mind"
http://www.bbc.com/future/story/20141003-the-mind-tricks-of-scammers?utm_content=buffer3be42&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

Take the abuse of dating websites. "People go on dating sites in the hope of fulfilment, and they sometimes get scammed," says Modic, who researches the psychology of internet fraud at the University of Cambridge. "And that makes me angry."

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


Tweeted by @ilparone

"'The Glass Cage' by Nicholas Carr"
http://www.bostonglobe.com/arts/books/2014/10/02/book-review-the-glass-cage-automation-and-nicholas-carr/1tTlJz3ik8q2GIyXBGbRUM/story.html

The doctors were good at spotting obvious tumors, because the software picked them right up. But they were lousy at spotting subtler cases, apparently because they'd come to rely too much on the computer, and not enough on their own eyes and brains.

[LinksEtc]

"When Docs Get Annoyed At Empowered Patients"
http://www.psychologytoday.com/blog/owning-pink/201107/when-docs-get-annoyed-empowered-patients

Apparently, this video entitled "The Patient Who Knows Too Much", which is part of a training program aimed at doctors to help them deal with "difficult patients," has caused quite a stir.

"Patients who present their expertise as telling you how to practice medicine are implicitly discounting your expertise," adds Leonard Haas, a psychologist at University of Utah School of Medicine.

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


"Patient Education - Can You Know Too Much?"
http://arthritis.about.com/od/buildyourhealthcareteam/a/patienteducate.htm?utm_source=twitter&utm_medium=sm&utm_campaign=shareurlbuttons

Being An Informed Patient Is Not A Substitute For Trusting Your Doctor.

Is it possible that a patient can believe they are more knowledgeable than they actually are?

Patients may be prone to create and present theories to their doctor, rather than merely presenting detailed symptoms.

[LinksEtc]

Tweeted by @joyclee

"It's time to admit that bad journalism is enabling crowdfunding scampaigns"
http://pando.com/2014/10/03/its-time-to-admit-that-bad-journalism-is-enabling-crowdfunding-scampaigns/

And just like every other campaign that either straight lied or fell apart and never shipped, Sethi utters that magic crowdfunding message : Pavlok is all ready to go into production, it just needs a little cash to get there.

The troubling reality is, journalists have deadlines and there are too many publicity hungry crowdfunders out their willing to help them out by badly overstating their hands.

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


Tweeted by @ElaineSchattner

"Chats with Russ – Dr. Wendy Sue Swanson"
http://russellfaust.com/blog/

the majority of "healthcare information" on the internet is actually MIS-information. It's designed to drive traffic to sell products; it's designed to drive traffic to pay-per-clicks revenue. It's NOT designed to provide accurate, useful healthcare information.

The fact is, when people have symptoms, or are given a new diagnosis that they don't understand, they do what ALL of us do when we have questions: they go online.

[LinksEtc]

I just want to say that I take liberties with moving CM's quotes around that I wouldn't do without asking if ok first with others ....



Re: If you were an allergy researcher ...

A lot of this thread is just lighthearted fun & ...

maybe a lurking allergist or 2 might find something that inspires  .....

but it does have a serious side ... What is our "place" as patients/caregivers?  Is there really a commitment to patient engagement in health care?  If a patient sees a potential solution to a general problem, if we have an idea, if we have a legitimate criticism or concern about an expert study or expert advice .... what is the best way to handle that? 

If in a support group, we start seeing what appears to be potential patterns in the anecdotes, should we not think about this because we are not an expert? 

If we see official positions from FA experts that go against our experience ... is there a way to let them know that we may be an outlier ... maybe their theory needs adjusting ... hey, study me!?!?

If somebody like CM or TT's husband has expert knowledge in another field that would change the way allergists look at things, is there a way to form collaborations?

Credentials are hugely important ... they matter greatly ... but are they the only way to get a seat at the table of discussion?

Re: If you were an allergy researcher ...

All stuff that I think about regularly, too.   

Multiple perspectives are generally a good thing-- as long as they don't compromise care/management in a timely fashion, YK?

I often consider this question, too-- as parents and patients with a life-altering, life-threatening diagnosis that requires ongoing daily management-- which, by and large, is a matter of a continuous string of judgment calls one after another-- eventually, that often gives us insights that even our allergists (no matter how expert) can't touch in THAT particular domain.

I'm not sure what to call such expertise, though, or how to measure it or credential such things.  Clearly they matter-- as any allergist or parent knows.  We do get better at living with LTFA with time, and it has a lot to do with experience. 

If only there were a way to include that very legitimate seat at the table.     All too often schools assume that we are not experts, when the reality is that a parent usually IS the "expert" on keeping his/her child away from the emergency room by the time a school has cause to interact with us.  Basically, it boggles my mind that any classroom teacher would not listen and heed a parent that looks at a series of events or planned events and says "Man, I sure wouldn't do that-- WAY out of my comfort zone."  There is frequently a good reason for that comfort zone.  At the very least, shouldn't the question be; "Why do you say that?"

[LinksEtc]

Re: If you were an allergy researcher ...

This is why lay review is often so frustrating.  Picking up the vocabulary isn't always enough to provide a true framework of understanding (assuming that a consensus exists).   There's no basis for evaluating the basic experimental design to tease apart those research articles which are bad/flawed, versus those that are good or well-considered and thorough.   That's critical, because the validity of the conclusions rests upon that distinction-- it's not how WIDELY READ a paper is, nor how popular with the press. 

What I find frustrating as a lay person is that if I base what I say to a doc or an allergy org on sound info, good sources ... they often still can't "hear" what is being said, they won't really look at the info. ... Like when I tried to convince a doc that hummus had enough sesame protein to cause a reaction ... I knew that I was right on this issue ... I had the info to prove it ... I couldn't convince her ... and she was a nice doc, we got along fine.  Sometimes I think the health community is more comfortable with patients/caregivers who don't have a good health care literacy.  When we start to know what we are talking about, it kinda freaks some of them out imo.


My idea of a great research setup would in no way be based on popularity.  It would be all about quality & potential & evidence.  I do believe in a Ratatouille type wisdom that a great idea can come from anywhere, including from a patient/caregiver.  How to best capture and develop those valuable patient ideas in the sea of patient pseudoscience is a really interesting question to me.  Even expert great ideas could sometimes use a bit of patient perspective tweeting tweaking imo.


Sometimes I wonder if the professional health community thinks that if they ignore the tough questions from FASer forum types, then we will fade away .... I think the opposite is probably true ... if they want to quiet forum users down, they should consider truly engaging, trying to address honestly and transparently our questions and concerns.  If more patient needs were met, I think more online activity might turn to more "acceptable" activities like sharing recipes and giving each other virtual hugs.



ETA - meant to say tweaking, not tweeting ... that's funny ...

Re: If you were an allergy researcher ...

When we start to know what we are talking about, it kinda freaks some of them out imo.



YES!!!



And I think that everyone deserves a clinician who is comfortable as a partner, rather than as a godlike, patronizing Figure of Absolute Authority.  Not all clinicians are-- and far too few clinicians have the time and inclination to really keep fully up to date on current practice parameters even within their own narrow specialties, nevermind some of the more esoteric or unusual (rare) things that we may present to them.

This places patients in an impossible position, actually.  Do we:

a) keep ourselves informed to the best of our ability?  this means keeping up with AAAAI meeting abstracts, patient-care guidelines as they are published, etc. 

b) follow the (sometimes out of date) recommendations, well-meant, of our physicians without challenging their authority?

If you're an informed patient, eventually that conundrum is going to present itself.  A good clinician is happy to keep learning-- and the really stellar ones are happy to learn even from patients!  Heaven knows where they find time, truthfully, but they do keep current on research in the field because they love their work and the field.  But a mediocre or just "competent" physician may not.  That person may still be a pretty good doctor-- just not for the ends of the bell curve in the specialty.... which... they may not even recognize since they've not kept current. 

I've seen that with allergists.  Ours knows that DD isn't the run-of-the-mill patient.  Not even in her cohort.  A less stellar physician could, in contrast, assume that we aren't really living what we are, and that we are just "not compliant" or "over-reactive."

[LinksEtc]

Re: If you were an allergy researcher ...

far too few clinicians have the time and inclination to really keep fully up to date on current practice parameters even within their own narrow specialties, nevermind some of the more esoteric or unusual (rare) things that we may present to them.

This places patients in an impossible position, actually.  Do we:

a) keep ourselves informed to the best of our ability?  this means keeping up with AAAAI meeting abstracts, patient-care guidelines as they are published, etc. 

b) follow the (sometimes out of date) recommendations, well-meant, of our physicians without challenging their authority?

If you're an informed patient, eventually that conundrum is going to present itself.

Great points made in that whole post CM.


ok ... this is one of those slippery slopes so let me try to be very careful with how I word this.


Doctors are the experts ... if you have a medical problem, get yourself to a good physician ASAP ... if you still are having doubts or problems, get yourself to another physician for a second opinion.  Do not try to just get your info from google or a support group.

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

Do not do this!  (@zdoggmd)

"I'm not big on thrombopoiesis"
https://m.youtube.com/watch?v=-rwcIRfHcAE&feature=youtu.be&a=

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



ok, this is stuff that I usually only whisper to myself because I don't want to lead others astray.


My google skills and/or internet forum activity has allowed me to recognize questionable medical advice quite a few times with quite a few different doctors from multiple specialties.  This type of thing is hardly ever acknowledged by those who are concerned about patients going on the internet.

It reminds me of "The Gambler" song ... sometimes you have to know how to play "the game", sometimes you have to know when to walk/run to another doc, at least concerning a specific issue.

What has allowed me to do this?  I'm not really that smart ... I know that the docs know a lot more medical info than me ... but the thing is, I often have more invested in my family's health than a doc that I just met and who might seem distracted or rushed & I have time to do a specific search on a specific problem. 

If you ask me to come up with solutions to the Israeli-Palestinian conflict or find a cure for cancer ... I do not have the ability.  However, if I have a lump under my ear that's been there a while and my primary is telling me not to worry about it ... but I find info from good sources on the internet that are telling me that maybe I should be concerned .... then I would diplomatically tell the primary that I would feel more comfortable seeing an ENT ... which is what I did years ago.

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


So, DO NOT diagnose yourself, but do educate yourself & get yourself to the appropriate medical doctor.