Docs helping patients to surf the internet

[CMdeux]

I continue to give back precisely because I will never forget what it was like to feel as though we were completely alone, because even the patient advocacy group that our physician told us about was saying that we must be hysterical, that we COULDN'T really have those needs, etc.

It was the most lonely and isolating experience I've ever had.  I don't say that lightly, by the way.  In comparison, it was MORE isolating that living with T1D, being a family member of a terminally ill loved one, living in a nuclear family with a person suffering from florid psychosis, and living in a highly abusive, dysfunctional home as a child.  MORE isolating.  MORE disheartening.  As noted, I do not say that lightly.

I've never forgotten what that felt like to me as a parent.  Despair-- that's what it felt like.   I would chew off a limb before I would turn my head away and know that by reaching out a hand or just whispering "You're not alone-- it gets better," I could lessen the emotional toll.     This is what family is supposed to do for us-- and it's what so few FA parents do experience with their families.  Being an outsider to EVERY human interaction is so incredibly difficult a journey-- and made more so when you also get the label of "choosing" to be that way, rather than any understanding that you really don't have a choice.

[LinksEtc]

CM, if I had to pick just one person who helped me with FA more than any other, it would be you.

 


Of course, I am very thankful to many others here & to docs, etc., but you should know how much your support has meant to me.  I always knew that I was not alone.

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On a lighter note ...

I wish I had some position of importance so that I could give you an award.   


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ETA - Part of the reason that I ended up at FAS was that when dd was first diagnosed ... FAAN was sending me to FDA & FDA was sending me to FAAN to learn about non-top8 sesame labeling ... so I branched out on my own.  My needs as a caregiver were not being met.  Then I got hooked on this group.

[LinksEtc]

This seemed to fit in here ...

"Moms, “Food Fears” and the Power of the Internet"
by BETTINA ELIAS SIEGEL on JULY 8, 2014
http://www.thelunchtray.com/moms-food-fears-internet-wansink/

I haven’t yet mentioned the fact that the study was funded in part by the Corn Refiners Association, the trade group representing manufacturers of the very “food fear” examined, i.e., concerns about high fructose corn syrup (HFCS).

Wansink also contrasts what he sees as the largely biased Internet with more trustworthy “mainstream media,”

The food industry would no doubt prefer a return to the days when it alone controlled the narrative about food ingredients and food processing.

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Tweeted by @marionnestle

"Conflicts of interest in nutrition research"
http://www.foodpolitics.com/2014/07/conflicts-of-interest-in-nutrition-research/

Over the July 4th weekend, a reader sent a link to a paper about to be published in the American Journal of Clinical Nutrition

"Increased fruit and vegetable intake has no discernible effect on weight loss: a systematic review and meta-analysis"
http://ajcn.nutrition.org/content/early/2014/06/25/ajcn.114.090548.full.pdf

Note the presence of companies making processed foods whose sales would decline if people ate more F&V.

[LinksEtc]

Tweeted by @HeartSisters

"When you fear being labelled a “difficult” patient"
http://myheartsisters.org/2012/12/09/labelled-a-difficult-patient/

Some doctors studied reported, in fact, that they secretly hope that their challenging patients will not return

Patients like me also walk a razor-sharp tightrope. We risk being labelled as “difficult” if we persist, yet we risk being dead if we don’t.

Worse, doctors may even slap the term “anxious female” on the patient’s chart, virtually guaranteeing subsequent misdiagnoses and dismissals during future visits.

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Tweeted by @HeartSisters

When your doctor mislabels you as an “anxious female”
http://myheartsisters.org/2012/06/04/anxious-female/

Researchers also found that the presence of stress shifted the interpretation of women’s chest pain, shortness of breath and irregular heart rate so that these were thought to have a psychological origin.

By contrast, men’s identical symptoms were perceived as cardiac whether or not emotional stressors were present.

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Let's talk about anxiety

[LinksEtc]

Tweeted by @drval

"How To Be A Bad Gastroenterologist"
http://tinyurl.com/osgzalt

I chose my gastroenterologist based on his credentials and the quality of training and experience listed on Healthgrades.com

I brushed my instincts aside, presuming he was just having a “bad day”

I persist in my attempts to understand the details to which he shouts “Shut up and listen” with increasing decibels.

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Twitter @AllergyTalk @DanaFarber

"As Patients Turn to Web Communities, Physicians Must Take Notice"
http://m.gastroendonews.com/Article.aspx?d=In+the+News&d_id=187&i=July+2014&i_id=1085&a_id=27765

“People initially join up because they want support and information. Those who stay want to share information and provide support, to give back,”

“We are moving from the era of traditional media, where people are receiving information, to one in which they are contributing to the knowledge source.”

[LinksEtc]

Standard Protocol for "Asthma Action Plans"

I tried to resist, really I did.  I brought no printouts to the pulmonary appointment, I was going to be the good mom and just talk about dd.

carefully watching my approach so as not to offend or look like google-mom

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Living with Food Allergies, FEB 2013

Dd has been having a bit of an asthma flare this week.  Ped office suggested coming in for a quick check and things looked good.  This was the first time I met this doc.  I just answered his basic ?s.
He told me I was one of the best educated asthma moms he's met  .


In the back of my mind I was congratulating myself for not sharing any of my unorthodox asthma ideas & staying strictly on-topic.   

I need to have a small procedure done.  The woman asks me if I'm allergic to contrast dye ... I tell her not that I know of, but I don't remember if I've ever had it ...

and this is when I think you fine folks  ...

She tells me not to worry because they have the Benadryl ready.  I couldn't resist ... I mentioned my understanding that Benadryl doesn't stop ana, epi recommended.  She said they used to give epi in those cases, but stopped due to worries of heart issues.  Then she reassured me that they do have a crash cart, but they don't like to talk about that ... Lol, is it wrong that I find this funny in a warped way.

Hmmm ... warm, fuzzy feelings indeed  ...

Is it wrong that I think I'll take my chances rather than risk annoying a doc with a printout of the NIH recommendations?     

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Hmmmm .... just thinking about how all of these topics in this thread seem related .... thinking that it's good to be aware of these issues as patients/caregivers.  I will hopefully be more successful in finding the right balance for myself & dd in the future.

[LinksEtc]

"Are you giving your doctor a headache?"
http://www.cnn.com/2011/HEALTH/07/07/ep.doctors.complaining.cohen/

getting information from other patients online is dangerous because "you don't know who these people are."

Share Internet information with your doctor wisely. Don't walk in with a stack of printouts that your doctor won't have time to read during the appointment.

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"Doctors Confess: 11 Most Annoying Things You Do"
http://www.rd.com/slideshows/annoying-patients/?utm_content=bufferd925c&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

Ask too many questions.

If you have three pages full of questions, show them to the nurse. Say ‘How many of these should I wait to ask the doctor about? How many can you help me with?’”

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Tweeted by @HeartSisters

"How do you share information with your doctor?"
http://medivizor.com/blog/2014/07/22/9-tips-sharing-information-doctor/

“[When I would share] what I’d learned from a credible resource such as Mayo Clinic, she was open to listening carefully. Had I simply said that I’d Googled something or discovered health advice from a source she deemed to be untrustworthy–Hello, Dr. Oz!– then there’s no way she would have been as open to hearing information that I was sharing with her.”~Carolyn

[LinksEtc]

"The BBC interviews two of my favorites on risk literacy & shared decision making"

http://www.healthnewsreview.org/2014/07/the-bbc-interviews-two-of-my-favorites-on-risk-literacy-shared-decision-making/

Two of my favorite health care thinkers appeared – together – in recent BBC magazine and radio interviews:  Gerd Gigerenzer and Glyn Elwyn.

The BBC magazine story, “Do doctors understand test results?” is worth a look. The two also appeared on the BBC radio Health Check program.

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"Do doctors understand test results?"
http://www.bbc.com/news/magazine-28166019

"The dentist wanted to X-ray her," Gigerenzer recalls. "I told first the nurse, and then him, that she had no pains and I wanted him to do a clinical examination, not an X-ray."

These words went down as well as a gulp of dental mouthwash.

But it's not just that doctors and dentists can't reel off the relevant stats for every treatment option. Even when the information is placed in front of them, Gigerenzer says, they often can't make sense of it.

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Number Needed to Treat: Treatments Don't Work Like You Think They Work
https://m.youtube.com/watch?v=eHxaDQNyfV4


Number Needed to Harm: Treatments Can Hurt You
https://m.youtube.com/watch?v=e_ytF2-4NkI


Test Characteristics: How Accurate was that Test?
https://m.youtube.com/watch?v=UF1T7KzRnrs


The Bayes Theorem: What Are the Odds?
https://m.youtube.com/watch?v=Ql2jEJ-6e-Y

[LinksEtc]

"Oversold prenatal tests spur some to choose abortions"
http://www.bostonglobe.com/metro/2014/12/14/oversold-and-unregulated-flawed-prenatal-tests-leading-abortions-healthy-fetuses/aKFAOCP5N0Kr8S1HirL7EN/story.html

a distraught Chapman said she wanted to terminate the pregnancy immediately

What she — and the doctor — did not understand, Chapman’s medical records indicate, was that there was a good chance her screening result was wrong. There is, it turns out, a huge and crucial difference between a test that can detect a potential problem and one reliable enough to diagnose a life-threatening condition for certain.

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"Advice on stock market crashes, plane disasters and bad weather. Can you risk not reading this piece?"
http://www.theguardian.com/books/2014/may/04/advice-stock-market-crashes-plane-disasters-bad-weather-risk-not-reading?CMP=twt_gu

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Tweeted by @drval

"Journalists jump at chance to say “fart” in a story; botch what study & news release said"
http://www.healthnewsreview.org/2014/07/journalists-jump-at-chance-to-say-fart-in-story/

Meantime, the assault on journalistic credibility…and the unwarranted assault on science by journalists who miscommunicate findings and then ridicule what they miscommunicate…continues.

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Twitter: @Dr_LopezJimenez @nprnews

"For Better Treatment, Doctors And Patients Share The Decisions"
http://www.npr.org/blogs/health/2014/07/24/333719559/for-better-treatment-doctors-and-patients-share-the-decisions?utm_campaign=storyshare&utm_source=twitter.com&utm_medium=social

"As doctors we tend to often use words like, 'very small risk,' 'very unlikely,' 'very rare,' 'very likely,' 'high risk,' " she says.

But those words can be unclear to a patient.

working on ways to involve their patients in shared decision-making

[LinksEtc]

"The Real Cost of Selling One’s Soul"
http://aphablog.com/2014/07/14/the-real-cost-of-selling-ones-soul/

future business decisions are based on what the sponsor expects or dictates, and not always what is better for customers, clients or (as is the case of the Alliance) members

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"Time for Informed Consent: The FDA Considers Risks of Power Morcellators in Fibroid Surgery"
http://www.forbes.com/sites/elaineschattner/2014/07/13/its-about-time-the-fdas-decision-on-power-morcellators-in-uterine-fibroid-surgery/

You have to wonder how many side effects of approved devices go unchecked, because of the limits of FDA’s handling capabilities, conflicts of interest, and doctors’ understandable fear of law suits.

Informed consent, however signed on paper, is meaningless if doctors misrepresent risks, or if patients don’t understand those but sign as a matter or trust, or under duress.

The solution involves greater transparency and reducing conflicts of interest at the FDA, and among doctors who perform and prescribe treatments anywhere.

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Tweeted by @HeartSisters

Yale's @hmkyale calls informed consent "a sham" - not an honest discussion of risks/benefits ow.ly/Kg3O8 #Lown2015 MT @Farzad_MD

---

"Cardiologist Blasts Patient Informed Consent Process"
http://www.healthleadersmedia.com/content/QUA-314224/Cardiologist-Blasts-Patient-Informed-Consent-Process

With no requirement that hospitals and clinicians be candid with patients about risks and costs, informed consent is "a complete sham," says Harlan Krumholz, MD, speaking at the Lown Institute conference this week.

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Tweeted by @hhask

"When financial pressures affect a dentist’s diagnosis"
http://www.washingtonpost.com/news/to-your-health/wp/2014/07/14/when-financial-pressures-affect-a-dentists-diagnosis/

A provider has great power when he or she makes recommendations because the patient is not knowledgeable, and in that power there is potential for abuse. The cure is to make the patient knowledgeable. A second opinion can do that, but to be properly impartial, that consulting doctor or dentist should not make money by selling the treatment that he or she diagnoses.

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Tweeted by @charlesornstein

"A Physician With a Troubled Conscience Puts Himself on the Couch"
"In ‘Doctored,’ Sandeep Jauhar Examines a Broken System"

http://tinyurl.com/kxwacs4

Medicine, in case anyone still has illusions about it, is apparently a business like any other.

[LinksEtc]

ok ... I guess it's time to stop with this thread ... I get the feeling that I could continue forever with this one ... it's like a yo-yo of thoughts ....


Soooooo, I'll leave off with this article tweeted by @charlesornstein


"Health literacy 101: The science of how to read the science"

http://m.theglobeandmail.com/life/health-and-fitness/health/health-literacy-101-the-science-of-how-to-read-the-science/article19571010/?service=mobile&cmpid=rss1

The Internet is a font of credible health information – if you know which sites pass the test, Francescutti said. Reputable sources include the Mayo Clinic, Johns Hopkins University and the U.S. Centers for Disease Control and Prevention. For searches beyond these well-known sites, Francescutti recommends checking out the U.S. National Library of Medicine’s online tutorial on how to evaluate which Internet sources can be trusted. “You have to be careful of snake-oil salespeople,” he said.

[CMdeux]

I think that is a great point, Links.  This is such a treasure trove of "how to" find one's own information.  While those of us with fantastic, intelligent docs who keep current with conference attendance, research work and networking, it might not be such a big deal...

but there definitely aren't enough of those allergists to go around for everyone, and in some locations, they may be a long, long way off.  It's always a good idea to be able to educate yourself (accurately!!) as a patient.  Trust-- but verify.   

[LinksEtc]

Thanks CM.

I can't resist (again) ... just 1 more ....

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Twitter:  @HeartSisters & @tessajlrichards


"Tessa Richards: Go with the flow"
http://blogs.bmj.com/bmj/2014/07/18/tessa-richards-go-with-the-flow/

Are online patient communities any better at producing accessible and reliable information, which patients find useful?

At a recent London meeting, convened by the charity Healthtalkonline, patients and carers spoke passionately about the value they derived from the information, support, and reassurance of online patient communities.

"The computer will see you now"
http://www.ft.com/intl/cms/s/2/17060096-07be-11e4-8e62-00144feab7de.html#axzz37q5i89tO

“Whatever you do,” said the doctor, “please don’t google this.” Her tone was almost pleading.

We googled like crazy. We googled the diagnosis, we googled the medication, we googled alternative therapies and then, for good measure, we googled the doctor. We even considered retaliatory googling

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Docs can have a sense of humor about google.

Ex - I was with my mom during one of her recent appointments.  Her doc is really great & he's funny.  We had asked a question but then his phone rings ... he smiles & excuses himself as he briefly steps out of the room ... looking at his phone & us & saying "let me look that up".   

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My GI is so nice ... we were talking one time and a test detail came up ... she told me in a confident, non-sarcastic way "look it up" ... like she gets it that I can find the info.

[LinksEtc]

I'm going to stop, really.  I'm losing credibility here  .


"How A Misleading Headline on Mammography Generates Confusion"
http://www.forbes.com/sites/elaineschattner/2014/07/18/a-misleading-headline-on-digital-mammography-caught-on-twitter/

But like other ostensibly negative analyses of breast cancer screening, it’s gaining traction on social media.

A take-away message may lead plenty of women, doctors and journalist to think that digital mammograms are expensive and not worth it. But the study @JNCI_Now says nothing of the sort.

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"Start the Patient-Doctor Relationship with Questions about Gathering Health Information"
http://network.socialmedia.mayoclinic.org/discussion/start-the-patient-doctor-relationship-with-questions-about-gathering-health-information?utm_content=buffere3e93&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

Recent research suggests patients want to share what they learn online but often get a negative reaction from doctors.

Starting as collaborators could make a big difference in how medical care is delivered as well as received.

[LinksEtc]

Forgive me ...   


Will.stop.with.this.thread.soon.   


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Tweeted by @kevinmd

"Patient satisfaction has come full circle: Why you need to care."
http://www.kevinmd.com/blog/2014/07/patient-satisfaction-come-full-circle-need-care.html

if you ever want to end a party early, start talking about patient satisfaction.

As physicians, we all want to improve the care we provide our patients. This is what we do every day, so we don’t need a survey to make us do the right thing.

Be nice Links.   

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Tweeted by @kfatweets

"An interview with Jessie Gruman"
http://www.kevinmd.com/blog/2014/07/interview-jessie-gruman.html

Lisa: What are the primary difficulties or frustrations you experience related to your activism?

Jessie: Knowing that it doesn’t matter whether I’m right or not to the people who are shaping health care today. Patient concerns are — rhetoric to the contrary — simply a low priority for the delivery of health care except for those deluded souls who believe that health care will be cheaper if we patients are more engaged, i.e., the more risk that can be shifted to us, the more likely we are to refuse expensive care.

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Tweeted by @kevinmd

"A physician responds to OpenNotes critics"
http://www.kevinmd.com/blog/2014/07/physician-responds-opennotes-critics.html

I can’t get away with labeling a patient in my chart as a symptom magnifier or minimizer, having poor insight into their contribution to the problem, describing pain that does not fit with the setting or findings, making poor choices, non-compliant.

The point is, the collected information, assessment and plan that the patient and clinician are basing diagnosis and treatment on should be used as a collaborative tool, not as the clinician’s private record of why they did what they did (to the patient).

I admire this approach/philosophy.

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Tweeted by @drval

"When Patients Read What Their Doctors Write"

http://www.npr.org/blogs/health/2014/08/14/340351393/when-patients-read-what-their-doctors-write?utm_source=twitter.com&utm_campaign=health&utm_medium=social&utm_term=nprnews

I sat down next to her and showed her what I was typing. She began pointing out changes.

As we talked, her diagnosis — inflammation of the pancreas from alcohol use — became clear, and I wondered why I'd never shown patients their records before.

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"Progress notes are a poor tool for doctor-patient collaboration"
http://www.kevinmd.com/blog/2014/08/progress-notes-poor-tool-doctor-patient-collaboration.html

Defenders repeatedly invoke “transparency,”

Some of the rhetoric has a defiant, even self-righteous tone

And there’s no clear endpoint: about 60% of the patients surveyed in the OpenNotes study believed they should be able to add comments to a doctor’s note

Hmmm ... such an interesting topic this is ... lots of different philosophies/approaches/attitudes among patients & docs.  I do not think that this doc & I would be a good doc-patient fit.