Docs helping patients to surf the internet

[LinksEtc]

Ok ... key themes in this runaway thread: "The Internet", Doc-Patient Relationships, Communication, Patient Knowledge (or lack thereof  ) & Education, Patient Orgs, quality of info, $/politics, etc.

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Tweeted by @AJCCancer

"Doctors told to dispense with confusing medical jargon"
http://www.theguardian.com/society/2014/jun/18/doctors-dispense-with-medical-jargon-patients

Doctors have been told to speak more slowly and use less jargon when talking to patients because their explanations of illnesses and treatments are too often confusing.

asking the patient to repeat the information back to them

"Patients when facing key decisions about their treatment can't do this in seven-minute GP consultations," Redding said.

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Dd just had some small procedures done.  During the prep, several medical professionals requested that I tell them which procedures were to be performed.  I got the sense that this was a protocol they followed ... seemed like a good practice.  They also called me a few days later to check on her.





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Tweeted by @SusannahFox

"Talks in Stockholm – the Land of Nobel"
http://www.epatientdave.com/2014/08/28/talks-in-stockholm-land-of-nobel/

https://m.youtube.com/watch?v=T2S6TYLarTk

4:29

This is useful information, but you know what, it does not exist in the scientific literature.

4:53

Something has changed.

7:54

There is too much information for anybody to keep up anymore.  This means that it is not an indictment of a doctor if a patient has seen an article that the doctor hasn't.

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Tweeted by @DrTrinaDorrah

"Experts by Experience: Patients Talk About What Worked & What Didn't"
http://www.thedoctorweighsin.com/experts-experience-patients-talk-worked-didnt/

A young woman with Ehlers-Danlos Syndrome (EDS), a rare connective tissue disease, became an empowered patient giving her doctor summaries of her symptoms, information about EDS from the Ehlers-Danlos National Foundation, NIH and medical journals.  Instead of being uptight about a patient educating her, this doctor said, "I want to say thank you for teaching me all you have about EDS...it has made me look at the other EDS patients I have differently... I just want to say thank you."  The amazed patient thanked her back and, in her words, "we hugged it out." (Wow!)

[LinksEtc]

"Managing Food Allergies and Sleep Apnea: Five Tips for Being Your Child's Best Advocate"
http://www.mothernova.com/blog/in-the-know/food-allergies-and-sleep-apnea/

We went through many emotions and a few pediatricians. They undoubtedly thought I was just another tired mom who had to be exaggerating about how awful my baby's sleeping was. Or, they thought it was behavioral and I needed to let him "cry it out" or use one of the many sleep training techniques.

I remember leaving one appointment in tears, vowing to find someone who would listen to, believe, and help us.

It can be so hard to keep advocating for a child when a doc keeps telling you that everything is fine when you know it's not.  Who are we to question, to doubt, the expert?  If our doubt is solidified by knowledge we gained on the internet, let me just say, that sharing this with the doc does not always go so well.  I think as patients, one of our most powerful options is the second opinion.

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2 sides of the coin:

A) Parent "learns" stuff off the internet like non-scientific anti-vax arguments and won't listen to doc's expert advice and puts child in possible harm's way.

B) Parent whose internet learning is based on good quality info & is legitimately skeptical about what doc is saying.  Not listening to doc & getting a new doc if necessary, may protect the child.

We are taught that docs are the experts, and they are, but with all that I've been through, the passive blindly-trusting mom is gone.

I think an expert doc & a knowledgeable caregiver can be an awesome combination for the patient ... if everyone can work well together, if the relationship dynamics are good.

[LinksEtc]

"Untangling the Web — Patients, Doctors, and the Internet"
http://www.nejm.org/doi/full/10.1056/NEJMp0911938

nothing has changed clinical practice more fundamentally than one recent innovation: the Internet. Its profound effects derive from the fact that while previous technologies have been fully under doctors' control, the Internet is equally in the hands of patients.

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Tweeted by @kevinmd

"Technology and the doctor-patient relationship"
SUZANNE STEINBAUM, DO
JULY 1, 2014

http://www.kevinmd.com/blog/2014/07/technology-doctor-patient-relationship.html

I hear people analyzing, criticizing, and surmising about this relationship quite a bit, and I don't blame them. The relationship you have with your doctor is a critical one, and yet it is fraught with misunderstanding, disappointment, and distrust.

I plan to open my mind to the next generation of people getting healthy through technology. 

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Tweeted by @heartsisters

"Has industry co-opted patient engagement?"
http://ethicalnag.org/2012/10/16/industry-co-opted-patient-engagement/

"Despite the rhetoric of 'nothing about me without me', organisational approaches to involve people seldom move beyond tokenistic consultations, questionnaires, one-off projects or overly-bureaucratic structures with a seat for a lay representative. The engagement industry may gather data about patient views but seldom uses it to inform decisions.

Online patient discussion forums may not be the noble grassroots support groups that I once believed them to be, either.

&


"What really goes on in your friendly online patient group"
http://myheartsisters.org/2013/09/20/behind-the-scenes-online-patient-group/



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Tweeted by @amcunningham

"Lucien Engelen: Patients not included"
http://blogs.bmj.com/bmj/2013/08/16/lucien-engelen-patients-not-included/

In the announcement it reads "One thousand representatives from all health related fields: Top-level scientists, political leaders, CEOs from industry, representatives from civil society and foundations, executives from the healthcare systems, students and young professionals."  And their vision and goals start with: "Bring together all stakeholders on an equal level."

But something or rather someone is missing here—what about patients?  They're not in the programme or on the advisory board.

[LinksEtc]

Tweeted by @DrLeanaWen

"Is your doctor listening to you? Here's how to avoid a misdiagnosis"
http://www.denverpost.com/smart/ci_26049363/avoid-misdiagnosibased-cookie-cutter-algorithm-by-preparing

Often, a misdiagnosis is the result of inadequate communication between patient and physician. The problem, says Wen: Doctors who rely on protocols and algorithms as the basis for a diagnosis, instead of listening to the patient.

"It's not 'doctor bad, patient good,' but a system that doesn't always allow providers to get a sense of the whole person," said Marisol Cifuentes, deputy director of Advancing Care Together at the University of Colorado department of family medicine.

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Tweeted by @HeartSisters

"WHY SMART PEOPLE ARE DUMB PATIENTS"
http://www.thedailybeast.com/articles/2014/07/14/why-smart-people-are-dumb-patients.html

Jobs' tumor was felt to be curable with immediate surgery. Yet this brilliant inventor, who revolutionized modern technological society, refused the recommended surgical procedure. He chose herbal treatment instead.

With the vast majority of American physicians trained with almost brutal intensity to serve their patients above all else, it seems the skepticism they face is still disproportionate to their potential for failure. The pendulum has swung too far in the other direction from physician paternalism towards willful ignorance by patients.         

[LinksEtc]

Twitter:  @hhask  @icorina

RANTS OF A PATIENT SAFETY ADVOCATE

"Bedside Story"
http://patientsafetyadvocate.blogspot.com/2014/06/bedside-story.html

I was there when he received the diagnosis from a physician eager to start chemotherapy that another physician later said surely would have killed him.

in the 2½ hours I was there one evening, no one washed their hands, no one shifted him, a hose from his breathing treatment dropped on the floor and before I could stop the nurse she reconnected it.

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Tweeted by @CUsafepatient

"Yanling's Story: A Wrong Decision, A Life Lost"
http://patientvoiceinstitute.org/2014/07/yanlings-story-a-wrong-decision-a-life-lost/

When we expressed concerns about the drug causing metabolic acidosis, the doctor got irritated and said, "I have been a pulmonologist for over 25 years and have treated many COPD patients with Diamox. You people need to stand back and let me do my job."

If you do your research and still feel unsure, ask for a second opinion. And a third, if need be.

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Tweeted by @hhask

"'I reported my concerns but was just given the brush off' - NHS whistleblowers tell of being ignored and marginalised"

http://www.telegraph.co.uk/health/healthnews/11007669/I-reported-my-concerns-but-was-just-given-the-brush-off-NHS-whistle-blowers-tell-of-being-ignored-and-marginalised.html

As Sir Robert Francis urges whistleblowers who have tried to raise the alarm over NHS standards to come forward, The Telegraph looks at some of their damning stories

[LinksEtc]

"Patient Advocacy in Patient Safety: Have Things Changed?"
http://webmm.ahrq.gov/perspective.aspx?perspectiveID=160

Online research and connectivity became the norm as the power of the Internet began to be felt. In 2003, the Pew Research Center's Internet and American Life Project found, to the dismay of many physicians, that 80% of Internet users had sought medical information online.(27) A new type of patient advocate, the e-Patient, started to emerge, self-defined as a "breed of informed health consumers, using the Internet to gather information about a medical condition of particular interest to them."

a disruptive technology that would upend medicine by creating a community of self-reliant patients whose group wisdom contained more expertise than that of the physician

Reminder for those reading: the docs are the experts, the medical professionals ....


on the other hand, FASers have stood up to a doc or 2.   


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Food Allergies: Facts, Myths, and Pseudoscience

[LinksEtc]

"Scientists Say F.D.A. Ignored Radiation Warnings"
http://www.nytimes.com/2010/03/29/health/policy/29fda.html?pagewanted=1&_r=0

For patients, navigating the debate can be difficult because doctors, patient advocacy groups and manufacturers often endorse positions that are in their economic self-interest. Radiologists, who often own and use CT machines, for instance, often endorse their use; while gastroenterologists, who often own and use camera scopes, often favor their own methods. Patient groups often get financing from drug and device makers, or physician-specialty groups.

I was first ignored, then pressured to change my scientific opinion, and when I refused to do that, I was intimidated and ultimately terminated

So often, quality of info and/or advocacy seems tied to $ and/or politics.

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"Misquoted And Misunderstood: Peanut Bans In Schools And A False Sense Of Security"
http://blog.onespotallergy.com/2014/01/misquoted-and-misunderstood-peanut-bans-in-schools-and-a-false-sense-of-security/

I was very interested to learn that in 1999, Ms. Munoz Furlong received a $14,000.00 grant from The Peanut Foundation, which is the research arm of the American Peanut Council.

Here are the grant particulars:

The decision makers and parents should also be educated that bans do not work.

[LinksEtc]

sesame seeds labeling: US specific (laws, loopholes)

www.regulations.gov

Request of Comments and Information on Initiating a Risk Assessment for Establishing Food Allergen Thresholds

FDA-2012-N-0711-0053

FARRP would assert that the FDA does not have compelling scientific data on the prevalence, severity and potency of other foods to consider any additions to the existing FALCPA list. In fact, if the three factors of prevalence, severity and potency are examined together, several of the existing foods may not belong on the list. Soybean allergy appears to be less prevalent than any of the others on the FALCPA list, soybean is not an especially potent allergenic food, and soybean has caused very few severe reactions. Much the same could be said for wheat allergy (not for celiac disease which does have higher prevalence). Crustacean shellfish allergy is very prevalent but the potency and severity of crustacean shellfish appear to be rather low. FARRP would encourage FDA to develop an algorithm based upon prevalence, severity and potency to determine which foods belong on the priority allergens list. The decisions should be based upon science. FARRP would note that ILSI-Europe is working on the development of an algorithm for possible use in the EU and FDA should monitor this ongoing activity. FARRP would further note that the U.S. does not really have good data on prevalence. This is also true on a worldwide basis (Rona et al., 2007), although the EU has funded the EuroPrevall project that should, when published, fill that gap for the EU. U.S. estimates are based mostly on telephone surveys (Sicherer et al., 1999; Sicherer et al., 2004; Sicherer et al., 2010). Telephone surveys are not supported by clinical confirmations. Thus, FARRP would encourage FDA to work with other federal agencies to obtain better estimates of the prevalence of various specific food allergies in the U.S. based upon unselected populations and clinical confirmations.

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http://www.foodallergy.org/about/leadership/advisors

Steve Taylor, PhD
Professor, Department of Food Science and Technology
Director, Food Allergy Research and Resource Program
University of Nebraska-Lincoln
Lincoln, NE

FDA-2012-N-0711-0062 (GM)

In addition to our direct comments, we fully endorse comments submitted by the Food Allergy Research and Resource Program.

How nice it would be if, for once, companies didn't fight some additional regulations.  It would be so nice if they said - you know, we support mandatory sesame labeling because we care about our customers and we are committed to their safety.  No company likes complicated or excessive regulations, but requiring the labeling of sesame makes sense.  Instead of fighting us, why not be true partners with us FA consumers?

I would like to know more about (FARE - FARRP - Food Industry - FDA) relationships & how they influence sesame allergy labeling (that is, if those relationships influence sesame labeling).  Again, I'm not accusing ... just expressing my wish to better understand the interactions of these groups.



Are experts ever discouraged from examining the current accuracy of statements like "the USA 8 most common allergens cause 90% of reactions"?
Prevalence Of Food Allergy To Uncommon Foods Based On Oral Food Challenges

I've said it before ... "The Top 8" is sounding more & more like "the Earth is flat".

[LinksEtc]

Tweeted by @Talking2YourDoc

"Understand patient expectations as part of a negotiation"
https://www.acpinternist.org/archives/2014/07/communication.htm

Doctors have things they want to address, but patients have things they want to address.

And there should be an explicit negotiation about the agenda of the visit. Both parties should realize that there's going to be a negotiation, and that means that neither party is going to be completely satisfied.

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Tweeted by @DrTrinaDorrah

"Doc, can I ask you one more thing?"
http://drtrinadorrah.blogspot.com/2014/08/doc-can-i-ask-you-one-more-thing.html?utm_medium=twitter&utm_source=twitterfeed

You can ask your staff to give all patients a Patient Agenda Form. This form asks patients to prioritize and record exactly what they want to discuss during the visit.

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Tweeted by @pash22

"Can patients get and use the information they need?"
http://www.kpmg.com/global/en/issuesandinsights/articlespublications/what-works/creating-new-value-with-patients/articles/pages/can-patients-get-and-use-information.aspx?utm_medium=social‐media&utm_campaign=2014-hc-what-works&utm_source=twitter&utm_content=gbl+2014+jul+27&utm_term=info+tw+promo

Patients need information that is often very different from the information that doctors think they need.

Our research into patient groups across the world consistently showed that, what patients felt was crucial information was ignored by clinicians. In fact for some patients groups the biggest gap between what patients needed and what they got was information.

[LinksEtc]

"Too good to be true science - creating mistrust or assurance?"
http://foodallergysleuth.blogspot.com/2014/07/too-good-to-be-true-science-creating.html

Reports of scientific findings linger on the internet, even if they are later found to be erroneous. Because most non-scientists never read the primary, peer-reviewed journal article, it is possible to look at reports of science many months or years after a study, and never realize that the actual science was retracted!

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Medical Apps Have Doctors and the FDA Worried

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Tweeted by @subatomicdoc

"Misinformation diffusing online"
http://www.sciencedaily.com/releases/2014/07/140731111015.htm

The spread of misinformation through online social networks is becoming an increasingly worrying problem. Researchers have now modeled how such fictions and diffuse through those networks. They described details of their research and the taxonomy that could help those who run, regulate and use online social networks better understand how to slow or even prevent the spread of misinformation to the wider public.

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http://www.gomerblog.com/disclaimer/

Gomerblog.com is strictly a satirical and fake news blog site.  All articles are fake

- I was moving along too fast with my links & this one got me for a second.


Tweeted by @Skepticscalpel

"Patient Satisfaction Survey Study Halted; Mortality Increased 238% with Patient Satisfaction"
http://www.gomerblog.com/2014/08/patient-satisfaction-2/

"Patient satisfaction appears to be directly related to increased mortality and morbidity," said FDA spokesman Dr. Rachel Barthow.

if a doctor mentions weight loss to the patient and they get upset, guess what? Negative patient satisfaction survey

a doctor who spends less time with patients and less time thinking about their medical problems will lead to decreased wait times

See - don't believe everything that you read on the internet!   

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"Nurse Relieved to Find Out that Patient's Family Member's Aunt is a Nurse"
http://www.gomerblog.com/2014/08/family-member/

"I have been working as a nurse for 14 years and every day I come to work clueless, just faking it," Jenny said. "It was such a relief tonight because as soon as I entered the room, I was directed on nursing care by a well informed family member in the room."

Jenny was floored by this family member's vast knowledge

[LinksEtc]

Tweeted by @kevinmd

"There really is no war on doctors: There's a war on patients."
http://www.kevinmd.com/blog/2014/06/really-war-doctors-theres-war-patients.html

doctors "prioritize our responsibilities as shepherds of scarce social resources to the same extent that we've historically prioritized our responsibilities for providing benefit to our specific patients."

The emerging realities of health care in the U.S. are rendering patient engagement imperative

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@drval

"The Screening Paradox"
http://www.thedoctorblog.com/the-screening-paradox/

What it did show was some polyps that had a 50 percent chance of becoming malignant colon cancer in the next ten years. I was shocked. If I had waited until I was 50 to start screening, I could have missed my cure window. The uneasiness about screening guidelines began to sink in.

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"Why patient stories actually matter"
http://myheartsisters.org/2014/08/10/why-patient-stories-matter/

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"The narrative in patient-centred care"
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2593554/

connecting with and understanding a patient requires the doctor to appreciate their unique perspective. This unique perspective is expressed through the patients' narrative, which doctors all too often see as a distraction from, 'getting to the bottom of things'

patients and doctors see the world in differing ways

[LinksEtc]

"Vaccine Opponents Can Be Immune to Education"
http://tinyurl.com/ld27sx3

People frequently resist information that contradicts their views, such as corrective information— for example, by bringing to mind reasons to maintain their belief — and in some cases actually end up believing it more strongly as a result.

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Tweeted by @hhask

"They said what?"
http://tinyurl.com/mazek3j

Al Lewis has started a blog called They Said What?, on which he posts the assertions made by companies and asks questions that probe the accuracy.

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http://theysaidwhat.net/about/

TheySaidWhat? asks somewhat rhetorical (ok, almost entirely rhetorical) questions that identify possible mistakes in high-visibility contexts and offers those who committed the mistakes the opportunity to correct, apologize for or retract their mistakes...or explain how their positions are correct and we have made a mistake by questioning them.

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Tweeted by @HeartSisters

"Patient + Internet = Jet Pilot?"
http://sunriserounds.com/patient-internet-jet-pilot/

Her family did not call us. They did not call her primary doc or endocrinologist. They did not go to an urgent care center.   They went on the Internet.

Patients should use the Internet as an educational and supportive tool and use their doctor to actually give medical care.  You should not have to do a "search" when your need for help is right now.

[LinksEtc]

http://www.scoop.it/t/social-media-for-healthcare


"Are You an Internet-Friendly MD?"
http://www.endocrine-witch.net/2011/12/16/are-you-an-internet-friendly-md/

Are you an internet-friendly or an internet-hostile doctor? Does it make you uncomfortable that patients will seek a "second opinion" online? Do you feel offended by the patients' attempts to learn more online? I hope not.

some of the best health-related websites have been made by patients! These websites often offer helpful information that physicians may think less important to discuss i.e. tips for coping and living with the disease.

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Tweeted by @HeartSisters

"Why is there so much hostility toward the patient experience?"
http://www.thedoctorweighsin.com/much-hostility-toward-patient-experience/

I think the issue is that instead of focusing on what it truly means to have a good patient experience, we've allowed ourselves to be swayed by people who equate patient satisfaction with patient dictatorship.

[LinksEtc]

Tweeted by @CSPI

"Coca-Cola's Assault on Tap Water"
http://civileats.com/2013/11/13/coca-colas-assault-on-tap-water/

Herein lies the inherent problem that accompanies "working with" Big Food; most health advocates' suggested changes and policies pose a threat to its profits.

[LinksEtc]

Tweeted by @nonutsmomsgroup

"Allergies / Anaphylaxis"
http://www.wrightslaw.com/info/allergy.index.htm

I think it's great he's putting together this page ... the only slight sadness I feel is that it seems a lot of people (not speaking about people who post here) & FA groups learn/benefit from FAS (& I could be wrong) but hardly ever acknowledge us or thank us ... not speaking of Wrightslaw specifically, but looking at that page made me think about this a bit.

For instance, this thread
504 index - 504 Plan Basics
has lots of views.  Is it really just school admins cursing us  or are people taking in info that is helping them? 

I see what we discuss here impacting the direction of some FA advocacy issues, but to many, we seem to be the group that "must not be named".  I know our freedom to speak our minds comes with a price, I know it can be a little rough in here, I know we don't have a med advisor ... but I try to give people/groups credit when I learn something from them, even if I don't agree with everything they do or say, even if I don't officially endorse them, even if I don't especially like them.

Sometimes I wonder why I post so much, especially now that I don't need much FA support at this time.  I really have some intrinsic passion for FA topics, I like helping people, it's intellectually interesting to me.  I still feel that I am not quite finished saying what I feel needs saying ... I feel a certain push to finish certain things.  Does what I do have a benefit to the FA community ... I don't know, but I hope so.  Like many here, the time is coming soon for me to step back from this.

FWIW, I think that FAS is an amazing place.

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ETA


Introduce Yourself - We're Glad You Found Us!

Page 20 - 21

Wrightslaw & Mame





http://www.wrightslaw.com/info/allergy.index.htm

Food Allergy Support. Join the discussion about what it is really like to live with food allergies.