Docs helping patients to surf the internet

[LinksEtc]

"When docs make mistakes, should colleagues tell? Yes, report says"
http://www.nbcnews.com/health/health-news/when-docs-make-mistakes-should-colleagues-tell-yes-report-says-f8C11498661

Medical mistakes are now estimated to kill up to 440,000 people in U.S. hospitals each year, making preventable errors the third leading cause of death in America behind heart disease and cancer.

The difficulty physicians have in communicating with one another when something goes wrong is an important factor," added Gallagher, who has been working on the issue for a decade.

Power dynamics, professional courtesy and a medical culture that shies away from confronting colleagues all play into the problem.

"Talking with Patients about Other Clinicians' Errors"
http://www.nejm.org/doi/full/10.1056/NEJMsb1303119

Or is it "no" ...

"Doctors shouldn't criticize other physicians in front of patients"
http://www.kevinmd.com/blog/2013/09/doctors-criticize-physicians-front-patients.html

by making public comments concerning his abilities, I undermined the trust that patients have in their doctors.

This is just my opinion, but I think what one doc thinks of another doc is generally none of my business (unless I'm looking for a referral/recommendation in which case the opinion would likely be positive) .... but as a patient, I don't want info about my health hidden from me (including things that went wrong) for reputation/liability reasons.


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

Tweeted by @modrnhealthcr

"Cleveland Clinic cases highlight flaws in safety oversight"
http://www.modernhealthcare.com/article/20140607/MAGAZINE/306079939?AllowView=VDl3UXk1Ty9Ddk9CbnhMTEJmaUxCVGEyakV3U0N1RlVFQmtK&utm_source=link-20140607-MAGAZINE-306079939&utm_medium=email&utm_campaign=digitaledition

Nearly four years ago, government inspectors investigating a complaint by retired Air Force Col. David Antoon threatened to cut off Cleveland Clinic from receiving Medicare payments after being stonewalled by hospital officials. The Vietnam combat veteran had accused the hospital of failing to fully investigate his charge that someone other than his authorized surgeon had performed prostate cancer surgery and left him gravely injured.

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

Tweeted by @hhask

"Patient-safety advocates issue call for regulation"
http://www.modernhealthcare.com/article/20140614/MAGAZINE/306149779/patient-safety-advocates-issue-call-for-regulation#

The late Wilbur Cohen, one of Medicare's chief architects, noted it wasn't a glitch that prevented the federal program from policing the practice of medicine, including its safety and quality. Rather, that was a design feature.

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

Tweeted by @writeo

"Both Sides of the Coin: A Physician and Patient Perspective on EDR"
http://oregonpatientsafety.org/blog/blog/both-sides-of-the-coin-a-physician-and-patient-perspective-on-edr/1562/

My mom said that what she really wanted was an apology. And the risk manager said "You know we can't do that." That quote changed my life.

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

Tweeted by @pmastors

"Lenore's Story: I Could Have Saved My Daughter's Life"
http://patientvoiceinstitute.org/2014/06/lenores-story-i-could-have-saved-my-daughters-life/

The takeaway for families: Be an informed patient. Find out who is performing any surgeries or treatment, and ask questions about how it will be monitored, and what they will be checking for. "You have to be educated and learn as much as you can," says Lenore. "I just trusted them completely. I knew nothing. I could have saved her life and that's really sad."

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

Tweeted by @SkolnikPatty

"Transparent Health - The Story of Michael Skolnik"
http://m.youtube.com/watch?v=n83gd1piUu4&sns=tw

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


I think patient connections on the internet, in patient support groups like FAS, help in identifying patient safety issues that maybe could be better addressed.

[LinksEtc]

"Medical errors and deaths: Is the problem getting worse?"
http://skepticalscalpel.blogspot.com/2013/09/medical-errors-and-deaths-is-problem.html

Adverse events and deaths due to medical errors are serious issues that need to be addressed. But inflating the incidence of these problems does nothing but further erode the already shaky confidence of the public in the medical profession.

And creating the impression that such events are totally preventable leads to unrealistic expectations and unachievable goals.

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


Tweeted by @buckeyesurgeon

"400,000 Dead from Physician/Hospital Error?"
http://www.jparksmd.com/blog/400000-dead-from-physicianhospital-error

Today I need to spend some time  addressing foundational reference points of her entire project, namely the idea that hundreds of thousands of Americans are dying due to physician incompetence.

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


"The ePatient and His/Her Physician: What's the Way Forward?"
http://healthworkscollective.com/denisesilber/150911/e-patient-and-hisher-physician-what-way-forward-summary-doctors20-hangout

The panel listed some of the new technologies that are changing the dynamic between the patient and the physician, and how the balance of power has shifted. This led to a discussion on how some doctors view the empowered, digitally savvy patient as a challenge to their authority and expertise.

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


Tweeted by @AmResProj

"The Secret To Patient Engagement – More Engaging Physicians And Health IT"
http://www.thedoctorweighsin.com/secret-patient-engagement-engaging-physicians-health/

Let's face it. Health care is still about everyone except the patient. Most physicians still relate to patients using a paternalistic, physician-directed communication style where the clinician knows best, does most of the talking and makes all the decisions for the patient. Patients are not supposed to be engaged – rather they are supposed to be passive and compliant.

[LinksEtc]

Tweeted by @SusannahFox

"OpenNotes: Putting Medical Record Transparency to the Test"
http://www.rwjf.org/en/research-publications/find-rwjf-research/2014/02/opennotes--putting-medical-record-transparency-to-the-test.html?cid=xsh_rwjf_tw

one kind of record has consistently remained off-limits—the doctor's own notes

The program—called OpenNotes—has been testing, in three different medical settings, the idea of patients having access to their physician's notes.

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

"The promise and peril of OpenNotes"
http://www.kevinmd.com/blog/2014/05/promise-peril-opennotes.html

Don't give them information in the privacy of their own homes that they aren't equipped to deal with, or anything that might hurt their feelings.

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

"Trisha's Misdiagnosis Story   "
http://www.everypatientsadvocate.com/misdiagnosis.htm

I told him I was trying to find another oncologist for a second opinion. There were too many question marks. His reply to me makes me shudder to this day, "What you have is so rare, no one will know anymore about it than I do!"

Records in hand, I began to google every word I didn't understand to see if I could learn more.

If I had to pinpoint an exact moment when this patient advocacy mission began, that moment would be it.

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

I guess I'm a fan of transparency.  I can deal with hurt feelings or difficult news, but let me know what is going on.  There may be some sense in letting the doc talk to a patient before giving them the record like in the cancer example.

[LinksEtc]

Since I'm the op, I'm taking some liberties & hopping a bit from topic to topic ...

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


Tweeted by @CUsafepatient

"Report smarter: Five lessons from Health News Review"
http://www.reportingonhealth.org/2014/05/11/report-better-five-lessons-health-news-review?utm_source=ROH+Newsletter+05/14/14&utm_campaign=Newsletter140514&utm_medium=email

Most news stories quoting risk statistics are talking about the relative reduction in risk, and that can make the benefits of a treatment look bigger than they really are.

an association between two things does not necessarily mean that one caused the other

relied on a single source or failed to disclose the conflicts of interest

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


Tweeted by @richardaedy

How bad is health reporting? Well 60-70% gets an F from @garyschwitzer of @HealthNewsRevu
http://mpegmedia.abc.net.au/rn/podcast/2014/06/mrt_20140612_1740.mp3

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


"A Guide to Reading Health Care News Stories"
http://archinte.jamanetwork.com/article.aspx?articleid=1867181

From April 16, 2006, through May 30, 2013, a team of reviewers from HealthNewsReview.org, many of whom were physicians, evaluated the reporting by US news organizations on new medical treatments, tests, products, and procedures. After reviewing 1889 stories (approximately 43% newspaper articles, 30% wire or news services stories, 15% online pieces [including those by broadcast and magazine companies], and 12% network television stories), the reviewers graded most stories unsatisfactory on 5 of 10 review criteria: costs, benefits, harms, quality of the evidence, and comparison of the new approach with alternatives.

[LinksEtc]

Tweeted by @CMichaelGibson

"Spurious Correlations"
http://tylervigen.com

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

"A physician's guide to interpreting cancer statistics"
http://www.kevinmd.com/blog/2014/06/physicians-guide-interpreting-cancer-statistics.html?utm_content=bufferebd1a&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

Association does not equal causation. "Prostate cancer mortality has declined by 30 percent since 1990, which must be due to PSA screening." It's tempting to make sweeping conclusions based on observational data.

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


Tweeted by @DrMartyMD

"Is the Quest to Build a Kinder, Gentler Surgeon Misguided?"
http://www.psmag.com/navigation/health-and-behavior/bloody-nice-better-cold-heartless-surgeons-84256/

Unaccountable is largely about health care transparency and how better public reporting of outcomes will create an environment in which bad surgeons like Hodad can no longer thrive.

to quote Stephen Sondheim, "Nice is different than good."

There will still be occasions when getting the best treatment requires enduring a jerky, insensitive surgeon. We shouldn't passively accept condescension and rudeness, but we must also remember that kindness and a good bedside manner don't always tell the whole story. Tame the Raptor, but don't lose his results.

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


Tweeted by @HeartSisters

"Do doctors lack empathy? It might surprise you to realize who thought the answer was yes"

http://medcitynews.com/2014/08/doctors-lack-empathy-might-surprise-realize-thought-answer-yes/#.VADUh-WPsVI.twitter

And that, in turn, led to a dramatic shift at the Cleveland Clinic, where he vowed to incorporate empathy, kindness and compassion back into the clinic, in place of the "cut well, sew well, do well" mentality that previously dominated.

[LinksEtc]

Tweeted by @AllergyKidsDoc

"Pulling back the curtain on Dr. Oz"
http://www.hcs.harvard.edu/~policylab/2013/06/14/pulling-back-the-curtain-on-dr-oz/

highlight some tools at your disposal to investigate media claims about health and nutrition. My goal is not to train a legion of armchair doctors. Rather, I hope to encourage readers to question the health claims they see in the media, and to seek the advice of qualified medical professionals where those claims appear to be unsupported.

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


Tweeted by @AACMaven

"Unreality TV and the Food-Allergy Epidemic"
http://asthmaallergieschildren.com/2013/06/11/unreality-tv-and-the-food-allergy-epidemic/

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


Tweeted by @subatomicdoc

Hacking Gmail w/ 92% success bit.ly/1ttlBzR >@ScienceDaily / How do you feel about those health apps now? #privacy #mhealth #HITsm

---

"Hacking Gmail with 92 percent success"
http://www.sciencedaily.com/releases/2014/08/140821124837.htm?utm_content=buffer81d04&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

The attack works by getting a user to download a seemingly benign, but actually malicious, app, such as one for background wallpaper on a phone. Once that app is installed, the researchers are able to exploit a newly discovered public side channel -- the shared memory statistics of a process, which can be accessed without any privileges. (Shared memory is a common operating system feature to efficiently allow processes share data.)

[LinksEtc]

Twitter:  @AmResProj  @DanielleNJones

"Talking to Patients about Digital Health Information"
http://www.americanresidentproject.com/blog/talking-patients-about-digital-health-information

It's estimated that 72 percent of patients get a majority of their health information online.

our responsibility as physicians has evolved from simply teaching patients about their health conditions to now include educating patients on where and how to find and identify reliable health information.

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


Tweeted by @theNPSF

"Empowering Patients As Partners In Health Care"
http://healthaffairs.org/blog/2014/07/24/empowering-patients-as-partners-in-health-care/

Recently, the National Patient Safety Foundation's Lucian Leape Institute brought together 40 patient safety experts — health professionals, patients, advocates, and others — to develop recommendations for how best to engage patients and families in improving patient safety.

What Can Providers, Organizations, And Policy Makers Do To Encourage True Patient Engagement On A Broad Scale?

[LinksEtc]

Ok ... really, I have some empathy for docs with this whole internet issue ...

"Going House of Cards on anti-vaxxers: Why we need Frank Underwood."
http://www.kevinmd.com/blog/2014/06/going-house-cards-anti-vaxxers-need-frank-underwood.html

but at the same time, sometimes us internet patients/caregivers really have become educated and knowledgeable, and what we say (our concerns, perspective, requests, etc.) should be considered and not reflexively tuned out.

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

Tweeted by @SusannahFox

"The internet spins both ways"
http://susannahfox.com/2014/06/18/the-internet-spins-both-ways/

Did you know some doctors once had a hand signal to warn their colleagues about internet-using patients?

the internet can help spin conversations toward misinformation or toward enlightenment

[LinksEtc]

http://susannahfox.com/2014/06/18/the-internet-spins-both-ways/#comments

In the spirit of using this blog as my outboard memory, I'll post a link that was shared on Twitter by Karen, a fellow food-allergy mom:

Docs helping patients to surf the internet

The thread starts with a catalog of links to articles about how clinicians should guide people to credible health websites. Then it gets interesting:

I didn't realize that she is also a FA mom.


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


Tweeted by @mtmdphd & @Doctor_V

"Doctors and social media: Damned if you engage, damned if you don't"
http://33charts.com/2014/08/doctors-damned-if-you-engage.html

One e-patient wants engagement, the other thinks it's creepy.  No wonder doctors are confused when it comes to their public voice.

I think both docs & patients are stumbling a bit trying to figure out how to handle internet issues.

For myself, after stumbling a bit, I've decided not to mix my online activities with my IRL doc-patient relationships unless the docs bring the subject up or want to discuss my extracurricular allergy/internet activities.  They are taking great care of dd and I don't want to mess that up in any way.

Another thing I've noticed ... when I listen to allergists now, my mind goes directly to forum threads & studies ... that's how I process allergy info now ... just like some patients process info better by hearing, simple visual, or less jargon ... but I think that one of my former allergists wanted to throw tomatoes at me when I mentioned a study ... that was my natural way of processing the info and what was happening, but my feeling is that it was taken in an offensive way which was not my intention. Sooooo ... I think just like docs should take into account how patients learn best, it would be a good idea for patients also to consider the communication preferences of docs.

[LinksEtc]

Twitter @hhask & @ReportingHealth

"When parents were shut out of their children's health care"
http://www.reportingonhealth.org/2014/06/19/no-one-knows-when-parents-were-shut-out-their-children's-health-care

Experts making smart decisions on your behalf but not necessarily explaining the decision-making process – or sometimes the decisions themselves – to you.

It seems unthinkable now that you would just hand your sick child over to a hospital and hope for the best. It's worth remembering that only a few decades ago the norm in health care was just that. Parents weren't welcome in children's wards.

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


Tweeted by @Ckconners

Father, Doctor, Role Model
http://www.nytimes.com/2014/06/17/health/the-good-doctor-a-sons-look-at-an-earlier-generation.html?_r=0

none of the changes was more profound than the evolution of the doctor-patient relationship

Phillip Lerner, the son of a Polish immigrant, came of age in an era when the doctor (almost always male) was king — the best and final arbiter in all medical matters. Patients could be patronized and even lied to, and the doctor could take it upon himself to accelerate the death of a terminally ill patient whom he deemed to be suffering excessively.

[LinksEtc]

Tweeted by @kevinmd

"Has abolishing medical paternalism gone too far?"
http://www.kevinmd.com/blog/2014/06/abolishing-medical-paternalism-gone-far.html

Like a parent who gives up hope of guiding an incorrigible teenager, doctors at times have heard the demand to stop being paternal as stop making recommendations at all.

The key for doctors is to understand that the information they offer is not commands, but rather guidance and teaching. They should be willing to say, "Well, your choices are A, B or C, but I would recommend B.  But, whatever choice you make I will support you."

Reminds me of the approach a doc took with my grandma ... I think this is a great approach.

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


"Just like me"

http://armstronginstitute.blogs.hopkinsmedicine.org/2014/06/02/just-like-me/?utm_medium=social&utm_source=twitter&utm_campaign=JHMSocial2,014&utm_term=Pronovost%20Blog&utm_content=Pronovost%20Blog

At its heart, she says, her approach was about getting caregivers to shift their focus when interacting with patients, from completing tasks to having meaningful conversations that forge a personal connection and build trust.

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


Tweeted by @TJCommission

"Culture Trumps Policies"
http://www.jointcommission.org/jc_physician_blog/culture_trumps_policies/

Culture will always triumph over policy, because a culture of safety is the mindfulness by each individual to look for and eliminate risk. Policies and processes give us framework, but care is delivered by individuals

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


Tweeted by @hhask

"Nursing professor's studies suggest ethics problem"
http://koin.com/2014/07/31/nursing-professors-studies-suggests-ethics-problem/

In Krautscheid's view, her students were putting their relationships with doctors and senior nurses ahead of their responsibilities to their patients.

"How do we teach courage?" Krautscheid asks. "How do we teach backbone?"

"It's easier just to go along and get along, and when you drill down on that through one-on-one interviews, what they tell you is, 'I have to keep working with these people, and it seems to be part of the culture that this is OK,'" Krautscheid says.

My opinion is that patients are safer when there is a culture that encourages patients, nurses, etc. to voice their concerns to somebody in a more authoritative position without fear of ridicule or retaliation.  Culture is so important.

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


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

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

"Second Semester Nursing Student Educates Staff Nurses on How to Properly do Their Job"
http://www.gomerblog.com/2014/08/nursing-student-2/

Myers continued, "I mean I thought my vast experience in handling over 150 delirium tremens patients in my career was worth something.  Emily reading a few chapters in school quickly trumped that."

[LinksEtc]

Tweeted by @kevinmd

"Women's right to vote and the e-patient movement"
http://www.kevinmd.com/blog/2014/06/womens-right-vote-e-patient-movement.html

All of this may sound familiar to patients whose opinions are considered not worth hearing because, after all, they're only patients, so what could they know?

This is directly relevant to cases where a physician feels that their authority is challenged by a patient who thinks.

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


I never really thought about all of these issues too much before, but I've had several experiences now that make me see their importance.  One experience, especially, left a mark.

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


A confession - I personally often learn more from our FAS forum threads than from published allergy research papers.  I bet, though, that not many non-patient medical professionals really truly "hear" what we say here ... maybe I'm wrong.  I listen carefully to what the experts say, but do most of the experts truly hear us?  I don't know.  Maybe they sometimes hear but sometimes don't like what we say (or how we say it) ... as a group, we do tend to talk back & challenge things frequently ... I think that this is both a strength & a weakness.

Granted, my people skills are a little rough around the edges, but when I've reached out trying to communicate, it is not uncommon to be ignored by the experts or to have the conversation cut short before my concerns/questions/ideas/suggestions/criticisms are fully addressed.  I do tend to be sometimes annoyingly persistent.  I see the importance and value of listening to the experts, but are patients in general (not just at FAS) truly listened to?

I think increased communication would be a good thing.  Ignoring issues often just make them grow.

Most of us want what is best for those with FA ... I wish we could work together more often ... but we can't dodge the difficult questions/issues ... it has to be real ... not just nice/polite.

Just rambling.

[LinksEtc]

Just wondering & letting my thoughts go where they will, not accusing, not saying any of this is how things are ....

Most docs seem to want good FA labeling to help their patients.  There's no ? that good labeling helps to keep those with FA safe ....... but

for instance, with sesame, are some hesitant to voice their opinion too loudly ... getting on the wrong side of FDA or FARE probably isn't something that most want to do.  FDA can impact careers.  FARE can boost doc reputations, send research $ to hospitals, help connect patients to trials, etc.

Even regular FA patient advocates ... do they not want to move forward with their own advocacy efforts (like sesame labeling) if that means annoying & losing endorsements/approval from FARE (by not sticking to FARE approved advocacy efforts)?  FARE has close ties to the food industry (ex - FARRP, sponsors, etc.) ... does FARE always have our (patients) best interest at heart?  Do we as patients/caregivers have a false sense of security that patient orgs are always looking out for our best interests?  Or are we being represented to the best of their ability?  They have done many good things.

Related thought ... when docs are involved online with patient advocacy orgs, do those docs still feel free to recommend info or associate with patients from other groups?

Are some people/groups shunned for not following the approved agenda or for being independent/critical?  Are there unspoken rules in the FA community & if so, what are they?

If a person/group doesn't endorse or like a FA product or service, how does that impact online FA interactions?

I don't know the answers.  I suspect the answers are different for different docs & orgs.

Don't mind me ... I'm just rambling.

How many people are willing to stand up and say loudly that it is time to label for sesame?  Is our community independent & brave enough?  Are our intentions pure?

[LinksEtc]

"The Silence of Shunning: A Conversation with Kipling William"
https://www.psychologytoday.com/blog/beyond-bullying/201309/the-silence-shunning-conversation-kipling-william

Williams points to whistleblowers as people who are almost always shunned, with up to one hundred percent of respondents who have engaged in whistleblowing experiencing shunning as a result.

Williams recognizes the human proclivity to ostracize as a way to enforce order and maintain control over subordinates. "Anthropologically this has been done for eons; burdensome members of groups are ostracized.

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



Tweeted by @kevinmd

"The risks of being a physician advocate"
http://www.kevinmd.com/blog/2014/05/risks-physician-advocate.html?utm_content=bufferb4c21&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

Do I value candor and integrity as an aspiring physician? Absolutely. But are those values worth the costs of alienating a patient, a residency director, or the powers that be who might impede my professional goals?

For the first time, I'm not so sure.

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



Tweeted by @HeartSisters

"How Manufacturer-Funded Research Compromises Patient Care"
http://www.forbes.com/sites/robertpearl/2014/07/24/how-manufacturer-funded-research-compromises-patient-care/?utm_source=followingimmediate&utm_medium=email&utm_campaign=20140724

And given the constant pressure in academia to "publish or perish," this bias could be more overt as researchers fear losing funding – even if a threat is never explicitly conveyed.

Regardless of the etiology, research bias and skewed results are real when medical companies fund studies on their products.

drug and device companies aspire to drive product sales, not produce unbiased research.

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



Peanut Threshold Study

I could be totally wrong here, but I am curious if the results will influence VITAL (the authors seem to have a lot of Australian connections).

http://www.allergenbureau.net/vital/vital

The VSEP is a collaboration between the Allergen Bureau, Food Allergy Research & Resource Program (FARRP) of the University of Nebraska & the Netherlands Organisation for Applied Scientific Research (TNO).

The study could impact advisory labeling.

The thing about FARRP is I keep seeing them push for less labeling.

For example:

sesame seed study.

Survey on Thresholds from FARE (page 4)

http://allergy.hyperboards.com/action/view_topic/topic_id/17461

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

New exemptions from Food Allergen Labeling

http://www.regulations.gov/contentStreamer?objectId=090000648121e481&disposition=attachment&contentType=pdf
page 130 & 154

[LinksEtc]

Still hopping from topic to topic.

Tweeted by @DrLeanaWen


"Heart Of The Matter: Treating The Disease Instead Of The Person"
http://www.npr.org/blogs/health/2014/06/25/324005981/heart-of-the-matter-treating-the-disease-instead-of-the-person

The two viewpoints of this ER visit end with one thing in common. Just as the providers were surprised by the patient's complaint, the patient and his wife were taken aback when the team that I was part of presented them with their doctors' point of view.

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


"Giving challenging patients the best care"
http://www.kevinmd.com/blog/2014/06/giving-challenging-patients-best-care.html?utm_content=buffer0ee64&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

Sue spends a fortune on printer ink. Each visit she presents an inch of Internet printouts. She has seen four oncologists and half a dozen other doctors for "second" opinions.  Each week there is a list of new minor or major questions and the rehash of prior decisions

it is the doctors responsibility, both for that patient, and other patients, and for the physician's staff, to help that person get care elsewhere and to walk away.

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


"Dear patient: Your 5-minute appointment is awaiting you."
http://www.kevinmd.com/blog/2014/07/dear-patient-5-minute-appointment-awaiting.html

You will have the opportunity to meet at least three more doctors while you are in the hospital. Do not expect them to be attentive or explain anything