Docs helping patients to surf the internet

[LinksEtc]

"Why I Play the Mom Card"
http://mobile.nytimes.com/blogs/parenting/2014/05/12/why-i-play-the-mom-card/

By BETTINA ELIAS SIEGEL

But when critics (usually men) want to de-legitimize my views, they often refer to me as a "mommy blogger," relegating me to an imagined intellectual wasteland of sippy cups and Legos, where supposedly no serious thinker would be caught dead.

We moms have a long history of bringing about social change, and I'm proud to be a small part of that legacy.

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


"YOU'RE the patient"
http://ronizeiger.com/youre-the-patient/

I walked into another room, this time a young man was on his smart phone. "I've been researching this a lot," he said, "and I think this is what's going on with my shoulder."

my immediate reaction was: I'll be the judge of that

This post is really awesome, spot-on, honest.  I actually had a doc 1/2 yell at me "I'M <dd's> doctor" ... yeah, a good match, we were not.   


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


Tweeted by @michaelseid11

"Patients don't need permission."
http://bennettgamel.blogspot.com/2015/05/patients-dont-need-permission.html

When I believe that change must begin from the top, I am unknowingly telling myself I can do nothing from the bottom.

I must go forward, whether my CF clinic, my hospital or the CF Foundation chooses to come along or not.

those who deal with this awful disease day in and day out, with no relief, have no time to wait for others to do it for us.

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


Tweeted by @ePatientDave

"OpenNotes: The results are in. GREAT news for patient engagement."
http://e-patients.net/archives/2012/10/opennotes-the-results-are-in-great-news-for-patient-engagement.html

this study is large (over a hundred docs and nearly 20,000 patients), and in three very different settings

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


Tweeted by @SolidFooting

"You Can't Understand Something You Hide: Transparency As A Path To Improve Patient Safety"
http://healthaffairs.org/blog/2015/06/22/you-cant-understand-something-you-hide-transparency-as-a-path-to-improve-patient-safety/

The clinical team who cared for Mrs. McClinton conducted a thorough investigation and explained the error to her bereaved family. The leaders of the organization revealed the error in an email to the entire staff, emphasizing the flawed system and vowing to learn from the event.

As a result of the public accounting of the case, other hospitals changed their procedures, even before The Joint Commission added a National Patient Safety Goal related to labeling of medications on and off the sterile field in perioperative and procedural settings.

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


"Bah Humbug—Cranky Year-End Allergy News Round-Up"
http://asthmaallergieschildren.com/2014/12/18/bah-humbug-cranky-year-end-allergy-news-round-up/

Dr. Keet comments, "As an epidemiologist who studies allergies and an allergist, I have to wholeheartedly disagree with this statement, and the problems with this statement have profound implications for the overall business model of Theranos."

Theranos


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


The New Child Abuse Panic


"The New Child Abuse Panic"
http://www.nytimes.com/2015/07/12/opinion/sunday/the-new-child-abuse-panic.html?_r=0

The task force identified these warning signs of medical child abuse: a "highly attentive parent" who is "unusually reluctant to leave his/her child's side"; a parent who "demands second and third opinions"; a parent who "is not relieved or reassured when presented with negative test results and resists having the child discharged from the hospital"; and a parent who has "unusually detailed medical knowledge." These warning signs accurately describe many, if not most, loving parents of medically fragile children.

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


16 years ago, a doctor published a study


Warning about ContentChecked and Wazinit apps


Management of anaphylaxis in emergency departments


Re: Desensitization Programs in the US -- OIT SLIT SCIT


Patient safety

[LinksEtc]

"Good" Patients and "Difficult" Patients — Rethinking Our Definitions
http://www.nejm.org/doi/full/10.1056/NEJMp1303057

Abiding by the unspoken rules of medical etiquette, I had quieted my internal alarms for more than 2 hours.

When we call patients and families "good," or at least spare them the "difficult" label, we are noting and rewarding acquiescence. Too often, this "good" means you agree with me and you don't bother me and you let me be in charge of what happens and when.

---


Re: Tweet response for @GilmerHealthLaw

Tweeted by @helenbevan

The outstanding talk that @allyc375 gave at #confed2015: "From patient voice to patient leadership" youtube.com/watch?v=dnhjgY... #mustwatch

https://m.youtube.com/watch?sns=tw&v=dnhjgYGbEpk

7:33

I'm a label queen

8:57

"Maelstrom of mayhem" is my particular favorite

---


Re: Reviewing your (child's) medical records

"A Difficult Patient"  (Seinfeld - about medical chart)
https://m.youtube.com/watch?v=ZJ2msARQsKU


Lol

Re: Communication and/or negotiation skills


Chapter 31
Communicating with the Difficult Patient or Family

Difficult patients, defined as those who do not assume the patient role expected by the healthcare professional, are encountered in every setting

Labels, such as difficult, hateful, or crazy, tend to follow patients and family members throughout the medical care process and negatively affect the way they are approached and treated (Lin et al., 1991).

By reinforcing and modeling professional behavior and avoidance of labeling, the team leader promotes high quality and safe, patient-centered care.

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



"The myth of the rational patient"
https://betabetic.wordpress.com/2015/03/19/the-myth-of-the-rational-patient/

All people are affected by confirmation bias - we are more attuned to, and more likely to put weight on, signals and messages which confirm the beliefs and thoughts that we already have. This means that the over-consulters are highly attuned to the 'Get worse quickly' message, and the under-consulters are very sensitive to the "Choose Well (Don't bother your doctor)" message.

Patients aren't being Bad in doing this – they believe themselves to be the special cases, they fear the consequences of delaying treatment

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


Tweeted by @subatomicdoc

"How can we be effectively warned not to give away our information online?"
http://www.sciencedaily.com/releases/2014/10/141015165058.htm?utm_content=bufferc6fc3&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

"We're trying to have people be more careful with the personal information they divulge online," says Dr. Carpenter. "The problem is what is it you can say to them that will be an effective warning?"

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


Tweeted by @pash22

"When are you really dead? Heart transplants fraught with moral dilemmas"
http://www.theage.com.au/national/health/when-are-you-really-dead-heart-transplants-fraught-with-moral-dilemmas-20141029-11dex4.html

How long should an organ be left in situ after a heart arrests, just to be sure that this condition is irreversible? Hospital practices differ in that regard.

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


"Stop Googling your health questions. Use these sites instead."
http://www.vox.com/2014/9/8/6005999/why-you-should-never-use-dr-google-to-search-for-health-information

Now, there are a number of other databases that bring together high-quality reviews on health issues and the Cochrane methodology has been applied to other areas of science — from education and crime to health systems questions. (See chart below.) These summaries are more accessible than ever before, not just for doctors, but also for the rest of us.

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


Tweeted by @hhask

"Patient Engagement - The Problem Is That Doctors Aren't Very Engaging"
https://www.linkedin.com/pulse/patient-engagement-problem-doctors-arent-very-stephen

After 17 years in the gig, I've run into lots of patients and families who want to practice without a license.

I finally learned how to say "No, I am the doctor here and we will do it my way or you can find another doctor." It works over 99% of the time. Less than 1% of the time we part ways, both of us being happier.

[LinksEtc]

Richard Smith: "Diagnose, treat, and cure" is largely dead
http://blogs.bmj.com/bmj/2015/06/15/richard-smith-diagnose-treat-and-cure-is-largely-dead/

Some doctors are scientists, but most, as all doctors know, are not

If you are a patient with acute meningitis then your recovery will depend mainly on what the doctors and nurses do, but if you have diabetes, hypertension, or chronic obstructive pulmonary disease it depends much more on what you do.

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


Tweeted by @hmkyale

2015 Commencement Address
Columbia College of Physicians and Surgeons
Harlan M. Krumholz, MD, SM

http://circoutcomes.ahajournals.org/content/early/2015/07/14/CIRCOUTCOMES.115.002117.full.pdf+html

And the world is changing. People with illness are no
longer passive, and you need to know how to empower and
dignify and respect those who seek your care. People are
increasingly getting access to their digital health data. They
are writing notes, sometimes from their hospital beds, which
are getting in the charts. E-Patient Dave, a noted patient advocate,
wrote a book entitled, Let Patients Help.

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


Tweeted by @HeartSisters

@JBBC I asked a conf audience/300 docs: "How many of you read patient blogs?" -1 hand went up (the doc who invited me to speak) #HealthXPh

&

Letting Patients Call the Shots
The "shared decision-making" model fosters a higher level of collaboration between doctors and the people they treat.
http://www.theatlantic.com/health/archive/2015/03/letting-patients-call-the-shots/388183/

For their part, not all doctors want to cede control to patients who have far less medical knowledge or who may be relying on information they got from friends and the Internet. Also, many physicians don't have the time for long discussions, and the healthcare system isn't set up to pay for them.

"It's a massive cultural change," said Glyn Elwyn, who researches shared decision-making at the Dartmouth Institute for Health Policy and Clinical Practice. "It's going from 'I'm the expert, take my recommendation' to 'I am going to inform you and respect your wishes.'"

&

"James McCormack and Mike Allan: Simply making evidence simple"
http://blogs.bmj.com/bmj/2015/03/20/james-mccormack-and-mike-allan-simply-making-evidence-simple/

Many clinicians find incorporating evidence into their practice a daunting task. However, there are many groups and resources available for busy clinicians that provide useful evidence summaries and synopses.

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


Tweeted by @kevinmd

"Not knowing what we don't know: How can we help doctors?"
http://www.kevinmd.com/blog/2014/09/knowing-dont-know-can-help-doctors.html?utm_content=buffer48d13&utm_medium=social&utm_campaign=buffer&utm_source=twitter.com

There have been many examples of patients who have helped themselves and their doctors by becoming experts on their specific diseases. When the doctor-patient relationship and partnership is excellent, both parties benefit greatly. Again, it is about teamwork.

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


Tweeted by @skepticonn

"What do doctors say to 'alternative therapists' when a patient dies? Nothing. We never talk"
http://www.theguardian.com/commentisfree/2015/mar/03/what-do-doctors-say-to-alternative-therapists-when-a-patient-dies-nothing-we-never-talk?CMP=share_btn_tw

Health literacy moves at a very slow pace. The alternative health industry, worth many billions of dollars, marches briskly. It will always attract unguarded patients who will cling to the faintest promise of recovery without associated harm. Whenever money changes hands and the premise sounds too good to be true, the motto remains: Caveat Emptor.

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


Social Media


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


ok ... I think I'm done with this thread for now.

[LinksEtc]

Did I say that I was done with this thread?  I lied again.  I'm hopeless.


For me.   


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


The Trouble With Evidence-Based Medicine, the 'Brand'
http://www.medpagetoday.com/Blogs/ThirdOpinion/52540

Don't get me wrong: I'm enthusiastic about evidence, and think strong evidence is invaluable for medicine. But the EBM movement and brand - that's more complicated.

And leaders promoting evidence started to slip into just the kind of "eminence-based medicine" EBM sought to replace.

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


Lyndal Trevena: Bringing evidence based practice and shared decision making together
http://blogs.bmj.com/bmj/2015/07/17/lyndal-trevena-bringing-evidence-based-practice-and-shared-decision-making-together/

As I write this blog, research teams from the four corners of the globe are travelling to Sydney for the first joint conference of the International Shared Decision Making (ISDM) group and the International Society for Evidence Based Health Care (ISEHC).

you can follow us on Twitter through the hashtag #ISDMISEHC

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


Tweeted by @lucienengelen

"The 5 things to ask your doctor."
https://www.linkedin.com/pulse/5-things-ask-your-doctor-lucien-engelen

Write down your current state and questions on paper (or digitally of course) at home.

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

"Doctors Complaints About Patients' Behavior"
http://patients.about.com/od/doctorsandproviders/a/doctorcomplaints.htm

Some doctors just don't want to work with empowered patients. They can't be bothered, or they are intimidated. Mary Shomon, the About.com Guide to Thyroid, reported that a doctor she used to see wrote "petite papier" (meaning "little paper" in French) on some patient records. The notation referred to the fact that Mary did much of her own research, and would compile questions ahead of visiting her doctor.

Tweeted by @HeartSisters

If you bring a list to a doctor's appointment, are you neurotic - or "seeking clarity, order, information & control"? nejm.org/doi/full/10.10...

-----

"The Disease of the Little Paper"
http://www.nejm.org/doi/full/10.1056/NEJMp1411685#.VJQ4UumMt_I.twitter

The reminiscence I bristled at most, though, was about ladies — always they were "ladies" — with something he called la maladie du petit papier: the disease of the little paper.

I know that often patients, sensibly, bring lists to make the most of hard-to-schedule and ever-shorter visits with their doctors — indeed, in recent years they've been encouraged to do so.

When a patient pulls out that little piece of paper, I feel a shift in the exam room: the patient taking charge of the agenda, my schedule running late, the reins of the visit loosening in my hands.

-----------


"Should you bring that list of questions to your doctor?"
http://myheartsisters.org/2015/01/11/la-maladie-du-petit-papier/

An elegantly dressed older woman in one of my recent women's heart health presentation audiences reminded me of my Mum.  At the end of my talk, she raised a beautifully manicured hand and asked me:

"Carolyn, my doctor says I have a heart rhythm problem. What does that mean?"

Too bad she hadn't whipped out this list while he was giving her this diagnosis. . .

------


"If you have an appointment for a routine check-up or health examination, you should know the following information before you leave"

http://tinyurl.com/nnokolv

[LinksEtc]

Tweeted by @HeartSisters

"The surprising way to stay safe in the hospital
Increase your odds by getting staff to listen and to treat you with respect"

http://www.consumerreports.org/cro/magazine/2015/02/the-surprising-way-to-stay-safe-in-the-hospital/index.htm

"MRSA wasn't diagnosed right away, but my family and I knew something was seriously wrong," she says. But when Day asked questions, the hospital staff behaved as though she was overreacting. "One nurse said, 'Your dad is just tired. He's been through a lot,' " she recalled. "Even after MRSA was discovered, one of the doctors shrugged and said, 'Well, these things happen. There isn't much we can do about it.' And though he was coherent throughout his illness, the doctors rarely spoke to him directly about his treatment; they came to my mother and me."

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


Tweeted by @AllergyKidsDoc

"Why Are So Many Patients Noncompliant?"
Medscape

In reality, though, the teamwork concept isn't working out too well. One reason is a chronic lack of time.

To be efficient, the doctor must control the conversation

The doctor, just as the patient, also experiences feelings during the consultation such as anxiety or anger

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


Tweeted by @Doctor_V

"Google's Evolution as a Health Knowledge Engine"
http://33charts.com/2015/02/google-health-knowledge-engine.html

Before now, Google was sewer of health misinformation.

If you want patient input, you're on your own.  Doctors are good for certain kinds of information.  Patients are also good for certain kinds of information.

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


Tweeted by @rvaughnmd

WebMD Knows Best?
How the digital era is changing the way we make medical decisions.
http://www.slate.com/articles/technology/future_tense/2015/03/webmd_and_self_diagnosis_how_the_internet_is_changing_medical_decisions.html

I am a doctor's worst nightmare.

What's missing from online medical sites isn't just good information; it's all the context and expertise needed to interpret it.

A study of cancer patients showed higher patient satisfaction with care when physicians reacted positively and took the information their patients found online seriously, taking the time to discuss it with them. I know that, in my case at least, this approach helped to foster a better working relationship between my doctor and me.

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


Doctor–Patient Communication About Cancer-Related Internet Information

Carma L. Bylund PhD , Jennifer A. Gueguen SM, EdM , Thomas A. D'Agostino MA , Yuelin Li PhD and Ellen Sonet MBA, JD

http://www.tandfonline.com/doi/abs/10.1080/07347330903570495#.VOo0jvnF8fU

[LinksEtc]

Tweeted by @GoAllergy

"When Doctors Don't Talk to Doctors"
http://mobile.nytimes.com/blogs/well/2015/06/18/when-doctors-dont-talk-to-doctors/?referrer=

As doctors, we place much emphasis on working with our patients to choose the right combination of interventions, and rightfully so. Yet I have seen that despite best intentions, patients and loved ones sometimes hear conflicting messages from caregivers about these plans.

Although medical knowledge is important, simply communicating amongst ourselves is a critical part of serving our patients – and one that is too often forgotten.

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


Tweeted by @picardonhealth

"'Cookies cause cancer, but sunshine cures it!' Scientists share blame with journalists for hyped claims: study"

http://news.nationalpost.com/2014/12/16/cookies-cause-cancer-but-sunshine-cures-it-scientists-must-share-blame-with-journalists-for-hyped-health-claims-study-finds/

It's journalists who tend to be blamed for this, accused of wilfully distorting and misrepresenting the science to generate headlines and click-throughs. That is unfair. Instead, let's look at the scientists as the British Medical Journal has done. It has reviewed press releases on health stories issued by the main universities in 2011, and tracked the subsequent news stories. It found that many of the exaggerations and inaccuracies in the news reports originated in the press releases.

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


Tweeted by @joyclee

"Meet the anti-Dr. Oz: Ben Goldacre"
http://www.vox.com/2014/12/27/7423229/ben-goldacre

Now with blogs, Twitter, and comments under articles, what you can see is everybody can talk back. On top of that, not only can people more easily find a platform to put things right when they're wrong and also explain how they're wrong and how to understand science better, but also anybody who is interested in something, who is sufficiently motivated and clueful, can go out and find out about it online.

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


Tweeted by @gorskon

"18 fact-checks of things that were wrong on the Internet"
http://www.politifact.com/truth-o-meter/article/2014/dec/28/18-fact-checks-things-wrong-on-internet/

Since PolitiFact began in 2007, we've rated 47 percent of shareable Facebook memes as either False or Pants on Fire, compared to just 20 percent that were either True or Mostly True. The track record of chain emails is even more dismal. A full 83 percent of chain emails have been False or Pants on Fire, compared to just 7 percent that were either True or Mostly True.

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


Tweeted by @SusannahFox

"Patient as Hero"
http://futurepatientblog.com/2015/05/03/patient-as-hero/

I tweeted into the fray: 'Not all patients can be heroes. For those with mental health problems, it is hard to 'choose' to change your life'.

Is 'patient as super-hero' set to replace 'patient to be rescued' as the modern medical narrative?

&


"The Power of Connection"
http://www.hhs.gov/blog/2015/06/24/power-connection.html

One of my favorite stories is set in 1994, when a man actually had to impersonate his doctor to gain access to a medical journal article about a surgical procedure he was being urged to consider.

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


Tweeted by @drval

"The Art of Discharge"
http://tinyurl.com/qelnpxh

After a three-day inpatient admission, at the time of discharge, she still didn't know whether the mass was cancer or what her next steps for diagnosis and treatment would be. So she spoke up and asked to speak to her physician again after the nurse handed her the discharge instructions.

She was shocked when she later received her bill and was slapped with a $300 surcharge on her hospital bill for a "delayed discharge" because she took longer than the 30 minutes that the hospital had allotted for patients to be discharged. Still, no clear answers were provided.

[LinksEtc]

I feel sort of like a lot of my big threads are merging at this point ... this "discussion" (yes, between me & me ... yes, it has already been established that I have "issues") also belongs here ... will just link


Re: If you were an allergy researcher ...



"There's something that is really quite perfect for this thread ........


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



Tweeted by @JBBC

"A ROUGH GUIDE TO SPOTTING BAD SCIENCE"
http://journeyingbeyondbreastcancer.com/2014/12/29/a-rough-guide-to-spotting-bad-science/?utm_content=buffer49239&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

I know I've written about this before on the blog, but today I came across two infographics which are worth sharing on how to spot medical quackery.  Ben Goldacre, author of Bad Science, classifies science reporting as falling into three categories – wacky stories, scare stories and "breakthrough" stories, the last of which he views as "a more subtly destructive category of science story".

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


Tweeted by @SusannahFox

Watchdogs a la carte: @hildabast @laikas @murzee @jordanrau @garyschwitzer @bengoldacre @FactTank Why: bit.ly/1DOxRiM

"Who are you addicted to on Twitter? Research watchdog edition."
http://susannahfox.com/2013/07/29/who-are-you-addicted-to-on-twitter-research-watchdog-edition/


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



Tweeted by @tessajlrichards

Tessa Richards: Is your conference "Patients Included?"
http://tinyurl.com/ov977xw

The challenge, of course, is to avoid tokenism and achieve authentic patient participation, which embodies partnership and yields dividends for all.

One point they firmly agree on is that patient delegates are different to other delegates and their participation in meetings must be funded.

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



Tweeted by @nicholas_bagley

"Ex-FIFA Official Cites Satirical 'Onion' Article in His Self-Defense"
http://www.nytimes.com/2015/06/01/world/americas/ex-fifa-official-jack-warner-cites-onion-article-in-defense.html?_r=0

Jack Warner, a former vice president of world soccer's governing body, FIFA, defended himself against corruption charges on Sunday by citing an article from The Onion, apparently unaware that it was satire.

[LinksEtc]

Tweeted by @charlesornstein

"I Fooled Millions Into Thinking Chocolate Helps Weight Loss. Here's How."
http://io9.com/i-fooled-millions-into-thinking-chocolate-helps-weight-1707251800

Onneken wanted to do it gonzo style: Reveal the corruption of the diet research-media complex by taking part.

Not to mention that a Google search yielded no trace of Johannes Bohannon or his alleged institute.

Here's a dirty little science secret: If you measure a large number of things about a small number of people, you are almost guaranteed to get a "statistically significant" result.

---


Tweeted by @aaronecarroll

"Speaking of wrong, so is everything about and in this piece on science reporting"
http://theincidentaleconomist.com/wordpress/speaking-of-wrong-so-it-this-piece-on-science-reporting/

It's an amazing read, and it's certainly captivating. It's also shockingly unethical. I don't know whether to love it or hate it.

---


Tweeted by @NPRHealth

"Why A Journalist Scammed The Media Into Spreading Bad Chocolate Science"
http://www.npr.org/sections/thesalt/2015/05/28/410313446/why-a-journalist-scammed-the-media-into-spreading-bad-chocolate-science?utm_campaign=storyshare&utm_source=twitter.com&utm_medium=social

Schwitzer is a fan of Bohannon's message – but he worries that it will get lost in our rapid churn, 24-hour news cycle, and the journalists who need to be schooled in proper nutrition science reporting will have already moved on to the next thing.

there are others who aren't taking kindly to Bohannon's work

---


Tweeted by @hildabast

Tricked: The Ethical Slipperiness of Hoaxes
By Hilda Bastian
Posted: May 31, 2015
http://blogs.plos.org/absolutely-maybe/tricked-the-ethical-slipperiness-of-hoaxes/

In Germany, if a doctor (or certain others) is going to do research in people that might affect their mental or physical health, or with identifiable data, she or he must first lodge an application to an ethics committee.

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



Tweeted by @EricTopol

"What Rare Disorder Is Hiding in Your DNA?"
http://www.scientificamerican.com/article/what-rare-disorder-is-hiding-in-your-dna/

As a consequence, scientists and policy makers are now scrambling to set up guidelines for how much information from such testing to share with patients and for how best to help them deal with the inevitable incidental findings.

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


Tweeted by @AllergyKidsDoc

Wanna know where I get my reliable #allergy #foodallergy #asthma info? It's NOT Google!
#FF @AAAAI_org @ACAAI @kfatweets @AAFANational

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


Tweeted by @MeredithGould

"Can you tuck me in?"
http://reginaholliday.blogspot.com/2014/12/can-you-tuck-me-in.html?utm_content=buffer22889&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

Until they insult your research...
Don't tell me about what you found on Google.

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


One of our family docs recently brought up the subject of "the clash" ... I said it's behind me now, I've moved on, but I mentioned how I think my googling tendencies were taken in an offensive way ... she smiled & admitted that she is also a MedicalGoogler.


From now on, I'm going to gently test the waters with any new doc regarding their GooglingPatient views (a little humor seems to be a good way to bring the topic up) ... my GoogleJedi skills are strong ... not wise to fully show those cards with most.

[LinksEtc]

"Why So Much Of The Health Care We Deliver Is Unnecessary - And What We Can Do About It"

Robert Pearl, M.D.Robert Pearl, M.D.  Contributor
Opinions expressed by Forbes Contributors are their own.
7/09/2015

http://tinyurl.com/oxyjbrf

Why do the recommendations by physicians to patients so often contradict the best science?

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



Tweeted by @HealthNewsRevu

"This study of hype in press releases will change journalism
New work shows the inflation of scientific results happens at many stages in the press game"
https://www.sciencenews.org/blog/scicurious/study-hype-press-releases-will-change-journalism?tgt=nr

The results reinforce that hype creep occurs at all levels of the news chain — beginning with the scientists themselves, the organizations wishing to promote the work and the media outlets that report on it.

&


"Televised medical talk shows—what they recommend and the evidence to support their recommendations: a prospective observational study"
http://www.bmj.com/content/349/bmj.g7346

Conclusions Recommendations made on medical talk shows often lack adequate information on specific benefits or the magnitude of the effects of these benefits. Approximately half of the recommendations have either no evidence or are contradicted by the best available evidence. Potential conflicts of interest are rarely addressed. The public should be skeptical about recommendations made on medical talk shows.

&



"British website gets "sassy" on Twitter about flawed health care journalism"
http://www.healthnewsreview.org/2015/02/british-website-gets-sassy-calling-out-error/

London-based BuzzFeed reporter Jamie Ross writes, "The NHS Is Calling Out Journalists On Twitter For Getting Their Facts Wrong."

The NHS contracts with a company called Bazian to look "Behind the Headlines" on health news stories.

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



Tweeted by @AllergicLiving

Address of @picardonhealth to new @um_medicine MDs. What patients long for: "Not just care, but caring." bit.ly/1F4CWRp #medicine

---


"A challenge for new doctors: Focus on the patient, not just the symptoms"
http://www.theglobeandmail.com/life/health-and-fitness/health/a-challenge-for-new-doctors-focus-on-the-patient-not-just-the-symptoms/article24859080/

I think the line that matters most in the oath is this: "Whatsoever house I may enter, my visit shall be for the convenience and advantage of the patient."

What does your patient want? What are his or her goals? Those are the questions that must guide your practice.

[LinksEtc]

"Don't Yelp Your Doctor"
http://www.usnews.com/opinion/blogs/policy-dose/2015/06/12/online-doctor-ratings-are-garbage

Patients are neither qualified nor capable of evaluating the quality of the medical services that they receive. How can a patient, with no medical expertise, know that the treatment option that he received was the best available one?

patients do not have the medical expertise to judge the quality of physicians' decisions in the short run and are neither capable of evaluating the outcomes of such decisions in the long run

I think he may be underestimating some of us patients.   

I've never Yelped anybody ... FASd, yes, in my own way w/o naming names.

---


"From the Patients Are Smarter Than You Think Desk ..."
http://mightycasey.com/yelp-this-b-tch/

Here's the thing: patients KNOW STUFF. Rather than telling us to shut up and stop Yelping, how about you recommend *listening* as a cure for what ails US healthcare?

---


"THE DOCTOR/PATIENT DIVIDE: AS FAR APART AS EVER?"
http://journeyingbeyondbreastcancer.com/2015/06/18/the-doctorpatient-divide-as-far-apart-as-ever/

We can't just talk about a commitment to patient centred care– we have to live it. It is only by bridging the divide which places patient and doctor expertise on opposite sides that we can achieve more personalized and meaningful care of the patient. The question now is how do we start to bridge that divide in tangible and meaningful ways?

---


Tweeted by @HeartSisters

"Are Patients Stupid?"
http://skinnybitchcronicles.com/2015/06/19/are-patients-stupid/

My objection to his article has nothing to do with online reviews and has everything to do with the implication that all patients are ignorant when it comes to their own medical conditions and completely incompetent to make medical decisions. This is a ridiculous implication.

&


"A painful topic: what doctors need to know (according to patients)"
http://doctorsbag.net/2015/06/21/a-painful-topic-what-doctors-need-to-know/

I wondered why the patient opinion was so different to mine. On Twitter it was suggested to me that more doctors should read patient blogs to understand their view better.

Doctors beware: don't expect flattery.

---


Tweeted by @MightyCasey

"Patients Qualified To Yelp Doctors"
https://cancergeek.wordpress.com/2015/06/19/patients-qualified-to-yelp-doctors/

We want to identify the physician, care team, and hospital that will include us in the decision making process. The team that will explain all treatment options with me, will address and answer all of my questions, and that will share and distribute to me my lab results, my physician notes, as well as my images.

Patients are the only ones qualified, capable, and knowledgeable to make those recommendations.

---


"On Making Patient Reviews of Physicians More Useful"
http://healthblawg.com/2015/06/patient-reviews-physicians-useful.html

I spoke with Niam Yaraghi (Center for Technology Innovation, The Brookings Institution) and Casey Quinlan (Mighty Casey Media) following their interesting back-and-forth online on the question of whether and how patient reviews of physicians can add value.

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


"When patients speak – some hear golden tones and others noise"
http://www.healthnewsreview.org/2015/07/patients-speak-hear-golden-tones-others-noise/

What's clear is that patients are standing up and shouting (and testifying and lobbying and advocating) to get a bigger voice in health care reforms. What is muddy is just how that's going to work.

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



"Why Second ... Or Third Opinions Are Important"
http://www.howardluksmd.com/orthopedic-social-media/why-second-or-third-opinions-are-important/

Interestingly, or perhaps "understandably (not)" as payments to physicians were cut, indications for surgery seemed to go up. Patients with knee pain which would likely improve without surgery were being told they "needed" surgery .. and seemingly for all the wrong reasons.

Feeding the issue is the mechanistic, factory style many practices have been forced to adopt.

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



Tweeted by @hhask

"It's Not Me, It's You: When It's Time to Break Up With Your Doctor"
http://health.usnews.com/health-news/patient-advice/articles/2015/06/17/its-not-me-its-you-when-its-time-to-break-up-with-your-doctor

Still concerned after her interaction with her son's pediatrician, Williams took her son, who had a pre-existing heart condition, to a cardiologist, who suggested Lyme disease could be behind the boy's symptoms. Williams returned to the pediatrician and requested additional lab work based on that possibility, but, she says, the request was denied.

Two weeks after his initial appointment, the 5-year-old received a diagnosis, not from his doctor but from an urgent care center – he did, in fact, have Lyme disease.

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



Tweeted by @rzeiger

A Death Well Lived
Melissa Walton-Shirley
April 17, 2015
Medscape

For reasons I don't understand, I blurted, "Diabetes is a terrible disease. . . . as is rheumatic fever," to which the daughter said, "As is cardiomyopathy." I smiled because this layperson knew as much about the treatment and physiology of cardiomyopathy as any healthcare provider. We were both teacher and student of that process from two very different perspectives.

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



Tweeted by @NCHforDocs

Digital Education for Patients and Families
When patients and parents want health information, they often turn to the Internet. Let's make sure they're finding the right sources.

http://pediatricsnationwide.org/2014/12/30/digital-education-for-patients-and-families/

Rather than leaving the answers to Google and Yahoo, doctors have a responsibility to preemptively educate our patients and families on the best and most reliable online resources before a question comes to mind. So instead of trusting a search engine, patients and parents can click their way directly to a trusted source.

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



I really don't think there's much left for me to say in most of these big threads of mine (but I have been surprised before) ... I may no longer keep up on the most recent stuff, but my guess is that I've touched on a lot of the important themes/points ... maybe threw a bit of disruptive thought into the allergy "world".

[LinksEtc]

"Dr. Google will never know you or care as much as I do"
http://www.kevinmd.com/blog/2015/05/dr-google-will-never-know-you-or-care-as-much-as-i-do.html?utm_content=buffer41a19&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

When patients come pre-armed with their diagnosis and treatment plan, they run the risk that their physician will stop listening for the important diagnostic details. If I'm busy and you aren't listening to my advice, I may not have time to argue with you.

I don't know about you, but the response in my head sounds like, "Why exactly are you here if you don't trust my training, expertise, and judgment? We are wasting each other's time."

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


"Anesthesiologist trashes sedated patient — and it ends up costing her"
http://www.washingtonpost.com/local/anesthesiologist-trashes-sedated-patient-jury-orders-her-to-pay-500000/2015/06/23/cae05c00-18f3-11e5-ab92-c75ae6ab94b5_story.html?tid=sm_tw

In addition to their vicious commentary, the doctors discussed avoiding the man after the colonoscopy, instructing an assistant to lie to him, and then placed a false diagnosis on his chart.

Round and round we go. Wheel of annoying patients we go. Where it'll land, nobody knows

In video - Gastroenterologist at 1:54

Here it's holier than thou. Too much internet use, a little too much information, kind of

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



Re: Tweet response for @GilmerHealthLaw

Tweeted by @HealthNewsRevu

Stop blaming "demanding patients" for driving up health care costs
http://www.healthnewsreview.org/2015/02/stop-blaming-demanding-patients/

"...dealing with patients who inform themselves about their conditions online has changed the usual medical relationship, according to Anthony Back, a cancer specialist at the Seattle Cancer Care Alliance.

"A lot doctors view this negatively as in, 'If only those patients didn't have this information my job would be simpler,'"

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


Tweeted by @GoAllergy

"Doctor Google is here to stay – and here to help"
http://tinyurl.com/p7oaw3p

Her increasingly urgent pleas for help were met with an admonishment to "stop Googling" her symptoms.

Just months later my "cured but anxious" patient lay dying

Mostly, what medics must accept is that searching for more information is a natural instinct, not a slight against one's doctor.

"May you cure sometimes, treat often, comfort always."

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


Tweeted by @EricTopol

   
Eric Topol on the Power of Patients in a Digital World
EconTalk Episode with Eric Topol
Hosted by Russ Roberts
http://www.econtalk.org/archives/2015/05/eric_topol_on_t.html

And that kind of--I think the--and you are right about this--the empowerment of patients through Google and medical access online to find out stuff, that people of course desperately do when they are in trouble, is changing that culture already. Because people are taking, they are challenging wisdom in ways the didn't before. Because they can.

But the premise is that patients are smart. And today, unfortunately, they are regarded as the Rodney Dangerfields, as I wrote--'Don't get no respect.'

&

"Weak oversight allows lab failures to put patients at risk"
http://www.jsonline.com/watchdog/watchdogreports/weak-oversight-allows-lab-failures-to-put-patients-at-risk-303445851.html?ipad=y

laboratories across the nation aren't following basic policies and procedures designed to ensure the accuracy of test results

Accrediting organizations that police labs on behalf of the federal government are allowed to keep their inspection reports private. In fact, federal law requires it in most cases.

&


SENSE ABOUT SCIENCE
MAKING SENSE OF SCREENING
A guide to weighing up the benefits and harms of health screening programmes

http://www.senseaboutscience.org/data/files/resources/7/Making-Sense-of-Screening-2nd-edition.pdf

Public expectations about screening don't always match what screening programmes can deliver.

We have drawn up this guide: first we asked specialists (clinicians and researchers) how screening programmes are evaluated and we investigated what people say about screening in day-to-day life. We then worked with the clinicians and researchers to pick out where discussions about screening are going wrong. We also liaised with some helpful members of the public

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


Tweeted by @parisreview

"One doesn't know quite what it is that one wants to get off the chest until one's got it off." — T. S. Eliot bit.ly/1oDzGIC

Yes.

[LinksEtc]

bump





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



Tweeted by @lucienengelen

"10 TED talks that change(d) healthcare"
https://www.linkedin.com/pulse/10-ted-talks-change-healthcare-lucien


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


Tweeted by @charlesornstein

"Cancer Charities Agree To Dissolve Amid Fraud Claims"
http://www.forbes.com/sites/williampbarrett/2015/05/19/cancer-charities-agree-to-dissolve-amid-fraud-claims/

The lawsuit said that from 2008 to 2012 the charities, through aggressive fundraising, raised $187 million in cash and spent less than 3% of that on true charity related to cancer. The rest went to fundraising, high executive salaries and personal expenses.

&


Journal's retraction highlights value of keeping 'a biostatistician in your back pocket'
BY TARA HAELLE | MAY 29, 2015
http://healthjournalism.org/blog/2015/05/journals-retraction-highlights-value-of-keeping-a-biostatistician-in-your-back-pocket/

The well-publicized paper, co-authored by Columbia researcher Donald Green and UCLA graduate student Michael LaCour, suggested that opponents of same-sex marriage were more likely to change their minds after talking with gay and lesbians canvassers. But, as Retraction Watch reported last week, LaCour faked the data.

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



Tweeted by @rvaughnmd

evidence itself never tells you what to do, never. It's always evidence in the context of values and preferences

Everything You Ever Wanted to Know About Evidence-based Medicine
Rebecca Voelker, MSJ
JAMA. 2015;313(18):1783-1785. doi:10.1001/jama.2015.2845.

http://tinyurl.com/lwofp6j


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



Tweeted by @EricTopol

"The crowd will see you now"
http://www.economist.com/news/science-and-technology/21651765-many-hands-make-diagnosis-work-crowd-will-see-you-now

CrowdMed

The volunteer diagnosticians are students, retired doctors, nurses and even laymen and women who enjoy pitting their wits against a good medical mystery.

It will be interesting to see whether the collective wisdom of practitioners and enthusiastic amateurs prevails over an algorithmic synthesis of the world's medical literature.

[LinksEtc]

"What you say matters: An insensitive comment in the ICU"
http://www.kevinmd.com/blog/2015/05/what-you-say-matters-an-insensitive-comment-in-the-icu.html

I panicked and meekly whispered, "I need wet-to-dry dressings. That is how they did it at the last hospital."

The nurse looked at me incredulously and retorted, "I have been a nurse for twenty years, so please just let me do my job."

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



"How doctors and families can work together in patient care"
http://www.kevinmd.com/blog/2015/04/how-doctors-and-families-can-work-together-in-patient-care.html?utm_content=buffer0a93e&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

Later that day, when her father developed respiratory distress, she was yelling orders to the nursing staff — despite our team's pleas to let us do our work.

She thanked the team for caring for her father, inviting her to rounds every day, and allowing her to suggest changes to Mr. U's treatment. The difficult family member was just a concerned child.

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



Tweeted by @ElaineSchattner

"A second opinion could save your life"
http://www.latimes.com/business/la-fi-healthcare-watch-20150525-story.html

"I remember having doubts about it because the doctor said I was fine, and that he knew what he was talking about," she recalled. "But, on the other hand, it didn't feel right and thought I should get a second opinion."

Several recent studies found that as many as 60% of patients who sought a second opinion received a major change in their diagnosis or treatment.

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



Tweeted by @dropeik

"Risk Reporting Fail, Part One. How Journalism Feeds Excessive Fears of Radiation"
http://bigthink.com/risk-reason-and-reality/risk-reporting-fail-part-one-how-journalism-feeds-excessive-fears-of-radiation

It is a common lament that people's fears of some things — vaccines, child abduction, genetically modified food, anything with the word "chemicals" in it — are excessive and fly in the face of the evidence. This lament is often raised loudly by science journalists, who blame these misperceptions on a lack of science education, or fear-mongering by advocates, or, frequently, on people being irrational. Yet excessive fears like these that have become widely accepted in society as basic truths have another fundamental cause; journalism itself.

&


"Risk Reporting Fail, Part Two; An Egregious Case of Journalistic Radiation-phobia"
http://bigthink.com/risk-reason-and-reality/risk-reporting-fail-part-two-an-egregious-case-of-journalistic-radiation-phobia

And in doing so she typifies what the majority of journalists, including many science journalists, do with their reporting about any risk (and I did too often during my 22 years as a TV reporter). They play up the scary, and play down or omit anything neutral or reassuring, and in the process they create and reinforce public fears... of vaccines, or 'chemicals', or child abduction, or radiation.

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



Tweeted by @Asthma3Ways

The Healing Power of Story
Hospital writer-in-residence promotes the central role of storytelling in medicine
http://hms.harvard.edu/news/healing-power-story?utm_source=SilverpopMailing&utm_medium=email&utm_campaign=05.21.2015%20(1)

"The storytelling is really where the medicine is," she said. "There is nothing that I can think of, there is no kind of testing, there is no sort of physiology or pharmacology that is more essential to clinical skill than the ability to elicit, interpret and communicate someone else's story."

we're hearing from patients that they want to feel that their stories are being heard

[LinksEtc]

I may write something up at some point (& I may not) ... want to save a few spots & a few notes.



google-patient / doc

the internet

disease/health communities

forums, bloggers, epatients - relationship w/ official orgs, official patient reps

health literacy

Risk Literacy

Bias

top down cultures

Patient-centered care

agenda, priorities

Influence

Cliques, diversity, agreeableness, likability

best-interest-at-heart vs $-politics-power

Patient safety

when things go wrong - transparency / sharing stories / accountability / learning from

yelping

hosp/doc rating/performance data/stats

the little guy

kindness, empathy, respect

responsibility

labels

which patient advocates are heard & which ignored

Legitimacy, credentials, recognized & respected, expertise, reputable

Knowledge, experience

Communication and/or negotiation skills

defensiveness, mocking, gossip, shunning

Reviewing your (child's) medical records

Individual consumer comments / FDA

Representation

getting past smile & nod patient engagement (Sus Fx)

being heard

good info vs dangerous/inaccurate/pseudoscience

doctor-patient relationship

intentions

Pride, humbleness

DIY patient stuff - apps, tests, etc

vulnerability

Social Media

shared decision making

caring, friendship, deep support vs professionalism, boundaries, health care, time constraints

privacy

conflicts of interest

Trust

Unmet patient needs

Roles


I seem to be in a bit of a philosophical mood.     



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



"How to Know Whether to Believe a Health Study"
http://www.nytimes.com/2015/08/18/upshot/how-to-know-whether-to-believe-a-health-study.html?rref=upshot&smid=tw-upshotnyt&smtyp=cur&_r=3&abt=0002&abg=0

Ultimately, no single study is perfect. Whether it's a randomized trial or a nonexperimental one, one can never be absolutely sure study findings are valid and applicable to you. The best bet is to wait, if you can, until evidence accumulates from many studies using a range of methods and applied to different populations.

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



Tweeted by @IgECPD

A group of UK bloggers get their allergy & asthma questions answered by @senseaboutsci Allergists and researchers bit.ly/1Nt5gTA

--

"Q&A about allergies with Sense About Science"
http://www.mumsnet.com/qanda/sense-about-science-allergies-qa


This seems nice ... often small groups of patients don't have access to experts like that.


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



Tweeted by @Paulflevy


"Empathy without action is empty"
http://runningahospital.blogspot.com/2015/06/empathy-without-action-is-empty.html

I think we have to understand that there is often a corporate separation between the public affairs side of the house and the clinical governance side of the house in the hospital world.  The former takes money and creative thought.  The latter takes an unceasing commitment to clinical process improvement and especially to transparency.

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



Tweeted by @HeartSisters

"How to Get the Best Care From Your Doctor"
http://www.nextavenue.org/how-to-get-the-best-care-from-your-doctor/

This is an uncomfortable truth about health care that people tend to learn the hard way. The story usually goes like this: You get sick or otherwise put your health care to the test. You suffer through sub-optimal health care and learn first-hand about the pervasive flaws. And so you slowly become a savvier wrangler of the health care system, which is sometimes called being an engaged and empowered patient.

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



Tweeted by @SusannahFox

"Champions of Change"
http://susannahfox.com/2015/07/10/champions-of-change/

By listening to each other, we can understand the pain points on both sides and recognize when we need to revisit existing policies, practices, and systems.

[LinksEtc]

"The media loves the Gates Foundation. These experts are more skeptical."
http://www.vox.com/2015/6/10/8760199/gates-foundation-criticism

Even though the foundation is one of the single most powerful actors in global health, remarkably few people ever had anything negative to say about its work outside of skeptical academics.

Another explanation for the silence, Harman argues, is that "everyone is scared of challenging Gates and the foundation's role because they don't want to lose their funding."

"The question of accountability and transparency is not unique to the Gates Foundation, but is a concern about the role of philanthropy generally."

More transparency & accountability in FA orgs seems like it would be a good thing.  Also, would be good if they gave patients a bigger role ... our priorities, concerns, suggestions, etc.


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


"A message to those taking care of my medically-complex child"
http://www.kevinmd.com/blog/2015/03/message-taking-care-medically-complex-child.html?utm_content=bufferd7a5c&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

I, like many parents in my shoes, have taken the time to learn the language you speak, read the same articles you read, ask many professionals and other parents for their experience, interpretation, etc. So please don't treat me like I'm some lay-person new to this environment. And even if I was, don't insult the capacity of a mama bear to understand a completely foreign subject when her child's life is at stake.

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


Statistically funny
Commenting on the science of unbiased health research with cartoons
http://statistically-funny.blogspot.com/2013/12/whats-so-good-about-early-anyway.html

And even most physicians - just the people we often rely on to inform us - don't understand enough about the pitfalls that lead us to jump to conclusions about early detection too, well...early.

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

The Disease Prevention Illusion: A Tragedy in Five Parts
http://blogs.plos.org/absolutely-maybe/the-disease-prevention-illusion-a-tragedy-in-five-parts/

It's ironic really. The lure of prevention is freedom from disease. But it has become a key driver of over-medicalization of our lives and a growing shadow of disease angst when we're the healthiest generation the world has ever seen.

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



Tweeted by @subatomicdoc

"Patients and the Power of Online Communities – Get on the Train"
http://www.intersectionofonlineandoffline.com/patients-and-the-power-of-online-communities-get-on-the-train/

I can tell you that on many occasions, I have seen that online (particularly Twitter) can have a meaningful impact that is often dismissed for lack of scientific rigor

I have seen new frontiers of vibrant, online communities that began with patients talking to patients and now include active discussions among prominent physicians.

Yeah, online matters.

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



Tweeted by @FdAllergySleuth


"Dire Consequences from Health Reporting: Portlandia-Style"
http://www.foodallergysleuth.com/2015/05/dire-consequences-from-health-reporting.html

Any one scientific study is not enough evidence to change behavior/medical advice/etc.

Do any credible educational, research, and professional organizations with a medical board comment on the topic? In the food allergy world, this means FARE, AAFA and KFA, FAACT, AAAAI, and ACAAI.

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



To come around full circle from the 1st post in this thread ... I think that it is confirmed that I am a sesame PITA.       I'm ok with that.

Also, I'm free to be critical of those respected sources.  For instance, I am a huge cheerleader for FARE's food allergy action plan (ECP), but I'm probably a huge pain in their rear concerning sesame.  Another example, if I just go to the FDA site to learn about sesame labeling, I would not be able to safely figure out how to read a label for sesame. 

CSPI Sesame Petition filed!!!