Docs helping patients to surf the internet

[LinksEtc]

Tweeted by @HeartSisters

"Doctors and Social Media — Increasing the good we do?"
http://www.drjohnm.org/2012/05/doctors-and-social-media-increasing-the-good-we-do/

Ms. Thomas, a heart attack survivor and author of two blogs, Heart Sisters and The Ethical Nag, wondered why patients would sign up in droves to listen to her talk about heart health—but often fail to hear their doctor's advice. In her post, Why You'll Listen to Me – but Not to Your Doctor, Ms. Thomas explores the reasons why doctors' messages are not resonating with patients?

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"Why you'll listen to me – but not to your doctor"
http://myheartsisters.org/2012/04/13/dr-mike-evans/

Dr. Evans tells his Belgian audience a moving story of patients telling other patients how to tell your kids you have cancer. He further warns the doctors:

"Patients are much smarter than you or I are about this subject, even it that's our field, and what they come up with is more useful and more real."

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"Doctors are a Broken Record We Don't Comprehend >80% of the Time"
http://www.forbes.com/sites/davechase/2012/10/14/doctors-success-hinges-on-transactor-to-teacher-transition/

many patients are embarrassed to ask the doctor to repeat something they didn't understand so they walk away confused. This has been a boon to health information sites such as WebMD — patients fill gaps of information by going to "Dr. Google". Most clinicians realize that communications is the most important "medical instrument" yet time pressures don't allow them to spend a great deal of time with patients.

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"Medical jargon: do you need a translator?"
http://myheartsisters.org/2013/09/28/medical-jargon-do-you-need-a-translator/

"Are you frickety-frackin' kidding me?"

My favourite readability scale used in the New Jersey study, by the way, has been in use since 1969 and is called "SMOG grading" – which stands for "Simple Measure Of Gobbledygook".

"You have to think about reaching people where they are."

[LinksEtc]

"The Most Shocking Mistakes Hospitals Don't Want You to Know About"
http://time.com/3066053/hospital-errors-never-events/

American Hospital Association (AHA)

what AHA and its allies have been pressing on CMS is the elimination of public reporting, not its improvement

Hospitals might be forced to respond to this patient misuse of data by improving efforts to decrease the incidence of never events.

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"What does a perfect pediatrics practice look like?"
http://www.kevinmd.com/blog/2012/05/perfect-pediatrics-practice.html

I'm also certain that I didn't answer every single question from every single parent. I would suggest it's impossible to do so when you see over 20 patients in a day, all the while answering phone calls, speaking and coordinating care for patients not in the office with outside specialists, filling out school forms for taking Benadryl or playing sports, and assisting the medical team to triage and communicate with families.

I have an up-to-date online repository of health information for families to browse and review pediatric health information when necessary.

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Tweeted by @CUsafepatient

"Not All "Patients" Are Created Equal"
http://sellingsickness.com/not-all-patients-are-created-equal/

Patient engagement and satisfaction have become trendy concepts and we must be aware which "patient" voice is being used.   Industry likes to use front groups, and present its positions through "patients."

We need to make sure the patient safety voice is not only represented, but can be heard over the noise of money, politics, and power.

[LinksEtc]

Communicating with Your Doctor
http://www.ucsfhealth.org/education/communicating_with_your_doctor/

The relationship with a doctor is a very personal one, built on communication and trust. In choosing a doctor, the "chemistry" between the two of you must work.

Balance assertiveness with respect and understanding.

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"What Did the Doctor Say?:" Improving Health Literacy to Protect Patient Safety
http://www.jointcommission.org/assets/1/18/improving_health_literacy.pdf

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Tweeted by @tessajlrichards

"The Challenges of Conceptualizing Patient Engagement in Health Care: A Lexicographic Literature Review"

http://www.jopm.org/evidence/reviews/2014/06/11/the-challenges-of-conceptualizing-patient-engagement-in-health-care-a-lexicographic-literature-review/

Despite the growing acknowledgement of the value of engaging patients in their health care, the term "patient engagement" is at risk of becoming nothing more than a "hot buzz phrase,"

Methods: Five electronic databases were searched from 2002 to 2013 with no language restrictions (included MEDLINE; PsychINFO; CINAHL;Web of Science; and SCOPUS). A qualitative software-based thematic analysis was performed on papers dealing with the concept of patient engagement retrieved by a systematic review of the literature.

Our results suggest that we view patient engagement as an evolving concept that reflects the historical and disciplinary context of the patient's care experience.

[LinksEtc]

Tweeted by @JBBC


"The Rise Of The ePatient"  (youtube video)
http://tinyurl.com/mssodg7

Don't miss 1:45 - I am guilty.
                24:45 - Beehive ... FAS?
                 Humor at 26:30, 27:50, & 33:33   

I've got a confession to make ... I'm one of those things calked a Medical Googler

... ok, I think that I understand my "problem" better now & how the "internet" can be a minefield in the doc-patient relationship ... maybe this thread was partially a self-help thread for me ....


but seriously, I think this thread has a lot of good tips that can help patients learn more about finding credible information, the perils & potential of the internet, & the doc-patient relationship (which as patients/caregivers, many of us have never learned too much about or given much thought to).

As is generally my style, I present different viewpoints and don't offer a lot of specific advice ... but it's one of those threads to get people thinking on their own.

[LinksEtc]

I keep trying to convince myself that I am done with this thread, but I'm just not ... soooo, I hope you guys don't mind ... I'm going to save some spots so that I don't have to keep bumping.   


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What is the role of the patient in their own care & managing their illness?  Let me peek into the mysterious world of physicians so that I/we can better understand doc-patient interactions.  How do we handle this "internet" thing?


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This is a free-flowing thread .... I'm not even going to try to give it structure ... it goes where it goes & anybody can join in.  A yo-yo of thoughts containing different ideas, experiences, & approaches.


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


To be clear, this is not just about FA for me.  It's not a secret (and I've mentioned it to a few of you) ... so I guess it's fine to post here ... that my mom has stage 4 breast cancer (in addition to other issues).  Let's just say that docs & hospitals & medical care issues are on my mind lately.  I don't want to especially talk about this personal stuff in this thread, but seeing things from a patient/caregiver perspective is a huge thing for me currently.

[LinksEtc]

Tweeted by @ePatientDave

"Tessa Richards: When doctors and patients disagree"
http://blogs.bmj.com/bmj/2014/09/04/tessa-richards-when-doctors-and-patients-disagree/

Ashya King's father scoured the internet and challenged the Southampton doctors' decisions. It's a scenario that health professionals have got to get used to. Information is being democratised, and suggesting patients should not access it on the grounds that it may mislead them is absurd. The new reality for doctors, as the jargon puts it, is to "act as guide, not God," and to avoid branding patients who do their own research as difficult.

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Tweeted by @woodrumlaw

"How Junk Science Spreads in Academic Journals"
http://tinyurl.com/pcszm98

Rekdal has studied how people in academic circles use and misuse information sources in their publications. He has found a number of unnerving examples in which scientific journals have become places where myths and urban legends can take root.

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Tweeted by @kevinmd

"Are physicians ready for the e-patient movement?"
http://www.kevinmd.com/blog/2014/02/physicians-ready-epatient-movement.html

I have found myself rendering treatment recommendations only after I've sat with a newly diagnosed patient for some time discussing (and yes, even debating) the data. I have also come to appreciate that an evidence-based approach to many cancers must take into account the individual and that her preferences and goals are as important as the results from the randomized clinical trials we hold as the gold standards. Not only do I appreciate these conversations, I have come to anticipate them.

[LinksEtc]

Tweeted by @charlesornstein

"Feds reverse course, will release hospital mistake data"
http://www.usatoday.com/story/news/nation/2014/09/07/hhs-change-reporting-hospital-mistakes-foreign-objects/15084175/

Federal regulators are reversing course and will resume publicly releasing data on hospital mistakes, including when foreign objects are left in patients' bodies or people get the wrong blood type.

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Tweeted by @HeartSisters

"Doctors' Magical Thinking About Conflicts of Interest"
http://www.nytimes.com/2014/09/09/upshot/doctors-magical-thinking-about-conflicts-of-interest.html?smid=tw-share&_r=0&abt=0002&abg=1

Conflicts of interest are real, and they are still influencing decisions from the level of the patient all the way up to national health policy. We will never be able to eliminate them all. But acknowledging them and talking about them openly is an important first step toward minimizing their impact.

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Tweeted by @DrLeanaWen

"Physicians touch sensitive subjects at TEDMED 2014"
http://www.ama-assn.org/ama/pub/ama-wire/ama-wire/post/physicians-touch-sensitive-subjects-tedmed-2014

Tackling the uncomfortable subjects—such as total transparency with patients regarding payment or medical errors—is a large part of TEDMED 2014

It's not just patients that are scared. Doctors are scared, too

[LinksEtc]

"Between paternalism and servility: A balance physicians must straddle"
http://www.kevinmd.com/blog/2014/09/paternalism-servility-balance-physicians-must-straddle.html

People sometimes wonder when they may question a doctor's diagnosis or advice.  I say always.

However — and it is a big however — this is not the same as physicians rubber-stamping everything patients believe or want.

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"Patients need education about their role in care"
http://www.kevinmd.com/blog/2014/07/patients-need-education-role-care.html?utm_content=buffere36f2&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

There's only so much providers can do: They are dealing with patient overload and are short on time. Can physicians shoulder the responsibility of giving patients and their families/caregivers the equivalent of a college course on how to become active participants in care and navigating our health care system?

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#PatientEngagement - what it is & is not

https://mobile.twitter.com/TomVargheseJr/status/510276679579623424/photo/1

[LinksEtc]

Tweeted by @nytrosenthal

"With genetic testing, I gave my parents the gift of divorce"
http://www.vox.com/2014/9/9/5975653/with-genetic-testing-i-gave-my-parents-the-gift-of-divorce-23andme

I would want a warning saying, "Check this box and FYI: people discover their parents aren't their parents, they have siblings they didn't know about. If you check this box, these are the things you'll find."

One of my favorite phrases is sunlight is the best disinfectant. I still think that's true. But this has challenged that worldview.

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


Tweeted by @rvaughnmd

WHY YOUR DOCTOR FEELS LIKE A 'BEATEN DOG'
http://www.thedailybeast.com/articles/2014/09/11/why-your-doctor-feels-like-a-beaten-dog.html?via=desktop&source=twitter

At one point they even told her she was delusional, despite her diffuse ulcerating lesions.

It's a well-known fact that many patients don't fit our heuristics. Instead, they have weird, unrecognizable constellations of symptoms—and most doctors don't have the time to deal with it.

There are too many patients like Jack and Victoria scrounging around for years until they find a doctor who will listen.

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Tweeted by @pfrishauf

Jessie Gruman videos

https://m.youtube.com/user/Cntr4AdvancingHealth/videos

[LinksEtc]

"If a doctor doesn't do excess testing, he isn't going to be able to live"
http://www.kevinmd.com/blog/2014/09/doctor-doesnt-excess-testing-isnt-going-able-live.html

"I order a drug and the patient calls me up and says the insurance company won't approve it, and somehow it is my responsibility to fight the company for them.

"To bill for lung spirometry, he would have the patient quickly blow into a tube. He didn't even look at the results.

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Tweeted by @d_rosen

"Placebos, nocebos, and the importance of communicating with our physicians."
http://www.psmag.com/navigation/health-and-behavior/potent-effect-doctors-words-can-well-90300/#.VA9Wf7JMfr0.twitter

Unless our medical system recognizes the true value of good communication between doctors and patients, and genuinely prioritizes this by providing the conditions necessary for it to thrive, the quality of our care will suffer even as its costs continue to rise.

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Tweeted by @CMichaelGibson

"Are Patients The Best Judge Of Physician Quality?"
http://www.forbes.com/sites/davidshaywitz/2014/09/13/are-patients-the-best-judge-of-physician-quality/

Another part of the answer will come from increasingly savvy, empowered, and data-laden patients who will value not only a reassuring laying on of the hands, but also the knowledge that the physician has demonstrated expertise treating patients like her.

[LinksEtc]

Food Allergy Experts INCLUDING Parents

Re: What age to self carry?

Re: 2013 Food Allergy Bloggers Conference - School Video

Re: Fatal Reaction

Re: So, when do you just DEMAND a challenge?

FARE CEO announced his resignation

Re: Let's talk about anxiety

Re: Let's talk about anxiety

Re: Let's talk about anxiety

Re: Let's talk about anxiety

Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy

Re: If you were an allergy researcher ...

http://foodallergysupport.olicentral.com/index.php?action=page;sa=Sesame_Labeling4
6th post down

Re: National Peanut Board creates allergy awareness website

Re: sesame seeds labeling: US specific (laws, loopholes)

Re: Doctors -- Pediatrician, Allergist, Psychologist, etc

[LinksEtc]

I few songs that may or may not fit in here, but that pop in my mind.   
Just going with the free & somewhat random thread format.



Disney's Frozen "Let It Go" Sequence Performed by Idina Menzel


Kenny Rogers - The Gambler


Aretha Franklin - Respect


The Cranberries - Dreams


Billy Joel - Honesty


Billy Joel - A Matter Of Trust


Ty Herndon "What Mattered Most"


Imagine Dragons - Demons (Official)


4 Non Blondes - What's Up


Tracy Chapman - Stand By Me


Five for Fighting - Superman (It's Not Easy)

[LinksEtc]

How to Read and Understand a Scientific Paper

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Tweet by @subatomicdoc

Educated consumers more likely 2 use potentially unreliable online healthcare info sciencedaily.com/releases/2014/... >@ScienceDaily #medsm #meded #s4pm

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"Educated consumers more likely to use potentially unreliable online healthcare information"
http://www.sciencedaily.com/releases/2014/08/140827122636.htm?utm_content=buffer64d47

Consumers are increasingly turning to forums, video-sharing sites, and peer support groups to gather anecdotal information and advice, which may distract them from more reliable and trustworthy sources.

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"The worst-case scenario: When patient satisfaction goes too far"
http://www.kevinmd.com/blog/2014/09/worst-case-scenario-patient-satisfaction-goes-far.html

federal incentives and tying reimbursements to patient satisfaction scores

Doctors must never be afraid to stand by their principles and clinical judgment. Patients are ultimately the ones who will lose out if that happens.

[LinksEtc]

Tweeted by @ShaliniPammal

"How transparent should doctors be with their patients?"
http://www.bostonglobe.com/lifestyle/health-wellness/2014/09/14/how-transparent-should-doctors-with-their-patients/yDnxvCElA6udJXrycuvzHI/story.html?hootPostID=a25b8cf86d2f1416f769e955fbf83aa5

"When my mother had breast cancer, we looked up her oncologist and found that he was a spokesperson for the pharmaceutical company that made the chemotherapy regimen that he had prescribed for her," she said. "Such a conflict meant we had no way of knowing whether this was actually the right regimen for her."

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Tweeted by @drval

"When "Why Are You Here Today?" Is the Most Important Thing You Can Be Asked"
http://tinyurl.com/n3erovx

my bilateral mastectomy

A person with lived experience on the team designing this safety protocol would have identified the effect the repeated questions would have on the patient. A person drawing on their experience as a patient would have realized that with each repeated inquiry, the patient and family member could experience increasing fear, doubt, and panic.

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Surgeon Caught Screaming at Nobody; Claims 'Practice'
http://www.gomerblog.com/2014/09/surgeon-screaming/

"She's a hell of a tantrum-thrower," said Dr. Wiscott, another general surgeon and close friend of Dr. Ivanovich. "She's somehow managed to fuse the frustration of a two-year old not getting their way with the anger of a raging teenager. It's really fantastic. That's pure natural talent right there. "

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Tweeted by DrLeanaWen

A surgeon shows his #vulnerability w patients--he can't type. I love this article #transparency @nytimeshealth well.blogs.nytimes.com/2014/09/18/you...

----

"Your Surgeon Seems Qualified, but Can He Type?"
http://tinyurl.com/kewwpxv

I've chosen to meet the awkwardness head-on. I turn towards the patient and say: "Forgive my hunting and pecking, I never learned how to type. Don't worry, I can operate just fine."

By admitting a little bit of vulnerability, I also show the patient that I'm human. Surgeons have traditionally been perceived as heroic, mythical figures who do great work in the O.R. but may not possess the best people skills. Typical surgeon communication of the past was gruff, paternalistic and authoritarian: my way or the highway.

[LinksEtc]

Tweeted by @DRSALWITZ

"In the end, it is about Life"
Posted by James Salwitz, MD

http://sunriserounds.com/end-life/

The Institute of Medicine of the National Academies has released their long anticipated 500-page report, titled Dying in America – Improving Quality and Honoring Individual Preferences near the End of Life.   This is a critical addition to the ongoing conversation about health care in the United States and makes observations and conclusions, which we need to consider and understand.

---

http://www.iom.edu/Reports/2014/Dying-in-America-Improving-Quality-and-Honoring-Individual-Preferences-Near-the-End-of-Life/Report%20Brief.aspx

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Tweeted by @glynelwyn

"Confusion in and about shared decision making in hospital outpatient encounters"
http://www.pec-journal.com/article/S0738-3991(14)00286-9/abstract?rss=yes?rss=yes

•Inadequate shared decision-making may introduce confusion in encounters.
•Physicians sensed inadequacy, but were not able to change communication strategy.

SDM may be discredited because the medical community has not acquired the necessary skills to perform it, even if it is ethically and legally mandated.

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Tweeted by @kennylinafp

"Has Patient-Centered Health Care Run Amok?"
http://www.cfah.org/blog/2014/has-patient-centered-health-care-run-amok#.U86pPcW-lX0.twitter

Beginning with the Institute of Medicine's (IOM) landmark Quality Chasm report in the late 1990s, the health policy establishment, the medical profession and the American public began to hear a new and disconcerting message: American health care was not patient-centered.

some doctors have resorted to just giving in to patients' demands even if their clinical judgment tells them otherwise. That's hardly good medical practice