Docs helping patients to surf the internet

[twinturbo]

You'd have to somehow filter out the crap. No ENT (ear nose throat), naturopaths, chiropractors, peds that think they can practice allergy, same for internals, GI specialists, primaries, anyone diagnosing on SPTs or RAST alone, E95, IgG or other quackery so it doesn't devolve into the Allergy Pride Parade.

[twinturbo]

The way I figure it those allergists that can punch out on FAs at 5:00 are heading out by 5:01 to enjoy the crap out of some pad thai followed up by a Peanut Buster parfait at DQ. Assuming they didn't for lunch.

[CMdeux]

Even if we're informed patients don't you think we're PITAs? Remember John the Internet EMT? The one who was probably a noob basic?

I'm pretty comfortable saying that our allergist does NOT think so.

But then again, this is what makes him Dr. Awesome in a BIG way, even aside from the fact that he's way, way smarter (and less egotistical) than the average bear.

[twinturbo]

Neither does it mean he wants to hang out together after hours and I accord him that respect when we run in to him and his family on various occasions about town. One time did turn into an impromptu playdate between the kids that I did not construe to be more meaningful beyond that instance. But I was speaking of most docs in general including the ones I know only through social means and not as a patient.

[LinksEtc]

Dr. Awesome appropriately sounds awesome.   

TT, I agree with what you said and the formality walls and traditional lines should stay as is unless certain docs & patients agree to change the "rules" in certain defined circumstances.   I'm not advocating this idea ... like I said, "pie in the sky" wish.

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The general topics of the internet & patient health research, of how it can impact the doc-patient relationship, of how groups like FAS are perceived & treated by others in the health community ...
these seem like important issues.

[SilverLining]

A place that it would be clear the docs would be free from liability concerns, free from concerns of violating ethical boundaries ....

They can do that as individuals, but not as doctors.

Can anyone remember when that doctor showed up on our forum giving some shady advice, and we thought it was someone impersonating a doctor?  Something about eating whatever you want and using an epi-pen regularly.

I would not want to be a part of a forum where doctor's posting as doctors give their own suggestions even if it goes against science.

[LinksEtc]

I feel like I sidetracked things with that offshoot discussion ... giving medical advice wouldn't be allowed and it would be a special setting of some kind (not an open forum) ... I'm not going to think too much about the details b/c it probably won't happen ....

My impression is that some approved patient advocates (from places like FARE & KFA) work with the docs to create things like action plans ... there is 2-way interaction ... but regular patients/caregivers don't seem to have a way to get that connection/to interact/to share general ideas and suggestions and perspective.  From my experience, discussing general suggestions with personal physicians is not always well received ... the main purpose of doc appointments is to concentrate on the specific patient.

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ETA ... seems kind of related ...

If you were an allergy researcher ...

Heard about this from @SusannahFox

http://c3nproject.org/about-c3n-project

The Collaborative Chronic Care Network (or C3N Project) grew out of a realization that the system for chronic illness care isn't really working

Ultimately, a C3N will be where patients, clinicians and researchers work together as co-designers in a learning, social production system for health that aims to transform the system of chronic illness care.

& another related post .....


"What's your health care dream?"
http://susannahfox.com/2012/02/03/whats-your-health-care-dream/

For me, Twitter is a free-wheeling space where people dance with ideas.

#whatifhc (which stands for "What if health care...?") became a flashmob of dream-sharing, a pop-up forum for health care ideas, no matter how idealistic, grand, or granular.

[twinturbo]

I totally support it and you, Links. Based on how much malpractice concern and cost is in USA I would think the first catnip you put out there to attract them is somehow obviate or neutralize that risk for them. Then they need some sort of incentive.

[LinksEtc]

Tweeted by @DrAnneEllis

"Five Reasons Not to Self-Diagnose Your Child's Food Allergy"
http://www.mykidsfoodallergies.com/five-reasons-not-to-self-diagnose-your-childs-food-allergy/

Have you "Googled" something recently? The relative ease by which Internet users can find information has led some people to begin searching for, and encountering, information and advice regarding various medical illnesses and injuries, including children's food allergies. It has also led to concern surrounding the issue of self-diagnosis.

Hmmmm ... have I googled something recently?   


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Tweeted by @JBBC

"How online patient communities are changing the face of cancer care"
http://blogs.bmj.com/ebn/2014/03/03/how-online-patient-communities-are-changing-the-face-of-cancer-care/

They are smart, motivated and experienced patients with an impressive and up-to-date knowledge of the best sources, centres, treatments, research, and specialists for their condition.

Providers are in a position to utilize quality assessment tools and existing resources that facilitate referring patients to authoritative, commercial-free, patient-oriented medical information on the Internet.

[LinksEtc]

Tweeted by @JBBC & @ranicholson

"CAN A HASHTAG CHANGE HEALTHCARE? THE IMPACT OF HEALTHCARE TWEET CHATS"
http://hcsmmonitor.com/2013/08/23/can-a-hashtag-change-healthcare-the-impact-of-healthcare-tweet-chats/

The role Twitter plays in breaking down patient/provider barriers, disseminating and expanding the reach of healthcare information, widening social networks and co-creating a collaborative model of shared health information is one of the most exciting developments in social media.

Twitter has also facilitated the emergence of  the "patient opinion leader"

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Tweeted by @JBBC

"SOCIAL MEDIA AND ETHICAL CONCERNS FOR HEALTHCARE PROFESSIONALS"

http://hcsmmonitor.com/2013/05/08/social-media-and-ethical-concerns-for-healthcare-professionals/

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"Should doctors Google their patients?"
http://www.kevinmd.com/blog/2010/04/doctors-google-patients.html

There are few ethical guidelines on this, with opinions on both ends of the spectrum: "Some people say absolutely it should never be done; it's a breach of privacy ... But then many say it should be done as a matter of routine. It's information that is in the public domain, and it may be information that is clinically relevant."

[LinksEtc]

Tweeted by @allergyPhD

"Patients can hurt doctors, too"
http://www.theguardian.com/commentisfree/2014/jun/11/patients-can-hurt-doctors-too?CMP=twt_gu

The article seems to fit with the whole doc-patient & internet themes in this thread.

nearly 70% of Australian doctors report written or verbal abuse by patients, and another 30% reporting physical aggression

Anonymous posts about doctors are gaining strength in a consumer-driven society where people rate doctors like they rate restaurants.

But patients have a great responsibility to be sympathetic to the unique and complex pressures that doctors face, and not hasten to impugn their motives.

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Tweeted by @hhask

"Myth: You Know When You Have A Great Doctor And Can Prove It"
http://www.forbes.com/sites/robertpearl/2014/06/19/myth-you-know-when-you-have-a-great-doctor/?utm_source=followingimmediate&utm_medium=email&utm_campaign=20140619

This week's article tackles a different question: How do you really know if your doctor, surgeon or hospital is good, bad or somewhere in between?

[LinksEtc]

Twitter: @ElaineSchattner @jessiegruman @brainmattersorg

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"9 Ways to Propagate Patient Power"
http://www.huffingtonpost.com/heidi-gottlieb/9-ways-to-propagate-patie_b_5446472.html

The Internet is invaluable.

I like doctor rating sites. These services keep doctors on their toes. If a doctor asks you to sign a legal document agreeing that you will not participate in one of these sites (I've heard that this is something that some doctors are doing now), walk away.

So listen to your gut. If it doesn't feel right, it probably isn't.

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I seem to be a person of many mixed feelings.  Saying something negative about a dr online seems a bit unfair to me because they are bound by HIPAA and can't tell their side.  At the same time, as a patient, I'd want to know if a lot of people had a problem with a doc I was thinking of seeing.

At FAS I have spoken of negative experiences in general ways (not naming names) to get support & share lessons learned (to benefit others) ... I don't know where the right line is ... what is a good & fair amount to share?

There has only been one time that I reported an issue to a doc's superior ... the main purpose of which was to address documentation issues in the medical record ... but I also was thinking of future patient safety ... but this was handled privately which I felt was appropriate.   The interests of docs & patients are usually pretty close, but there are times when this is not the case.

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"Are You Kidding? When Doctors or Surgeons Are Jerks"
http://patients.about.com/b/2014/04/27/are-you-kidding-when-doctors-or-surgeons-are-jerks.htm

So - Tuli loses points for two things:  refusing to talk to her patient's husband post surgery and then suing him when he shared his experience online.

examples of why we cannot trust doctor's ratings sites

trust that inner voice of yours to help you sense when something just does not seem right

[LinksEtc]

Tweeted by @hhask @med_writer


"Patient Engagement: are all patients able to be active participants in care?"
http://martineehrenclou.com/2014/06/patient-engagement-are-patients-able-to-be-active-participants-in-care/

Everyone, on all sides of the table, is doing their best to change how healthcare is delivered and received. Some are motivated by patient satisfaction scores and penalties, while others are motivated by study results which show that patient-provider partnerships and patient engagement increase quality of care and patient safety.

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Tweeted by @DrLeanaWen

"Hit by a car, an emergency doctor experiences firsthand the shortcomings in ER care"
http://www.washingtonpost.com/national/health-science/hit-by-a-car-an-emergency-doctor-experiences-firsthand-the-shortcomings-in-er-care/2014/06/09/585f3556-c59e-11e3-bf7a-be01a9b69cf1_story.html

Staff asked misguided questions, skipped tests and left the emergency room doctor in a hallway for hours.

The good patient in me felt embarrassed that somehow I had failed the "test" and was now an unnecessary admission

Instead of feeling like a connected patient at the center of care, I felt processed.

[LinksEtc]

I know I'm getting sidetracked again, but I'm going to be flexible in this thread as my thoughts on these topics are jumping around a bit.

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"Doctors firing back at patients' online critiques: Lawsuits target harsh Web posts"
http://www.bostonglobe.com/lifestyle/health-wellness/2013/03/30/surgeon-suit-over-criticism-posted-online-patient-husband-part-wave-such-claims/TLAp5DOMpZISPevfLL6B1I/story.html

While the rating sites are generally immune from libel claims, said Sandra Baron, executive director of the Media Law Resource Center in New York, individuals who post comments are not. In general for a doctor to win such a suit, she said, the statements made by the patient have to be shown to be false and to have hurt the doctor's reputation.

doctors will not find satisfaction through the courts, but by using the Internet to their advantage — encouraging happy patients to write online reviews and trying to address the concerns of those who are not.

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Speaking of happy patients ...

Tweeted by @Doctor_V

"The Cost of Satisfaction:  A National Study of Patient Satisfaction, Health Care Utilization, Expenditures, and Mortality"
http://tinyurl.com/oxfbqzk

Conclusion In a nationally representative sample, higher patient satisfaction was associated with less emergency department use but with greater inpatient use, higher overall health care and prescription drug expenditures, and increased mortality.

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Tweeted by @afrakt

"Quality and the curate's egg"
http://m.qualitysafety.bmj.com/content/23/7/525.long

Some have argued that measuring patient experience is a distraction.

A recent systematic review found that patient experience is usually positively associated with patient safety and clinical effectiveness across a range of diseases, populations and outcome measures.

[LinksEtc]

Tweeted by @ReportingHealth

"No One Knows: Informed patients make hospitals better"
http://www.reportingonhealth.org/2014/05/31/no-one-knows-informed-patients-make-hospitals-better

Hospitals may not always see complaints as signs of support.

When patients are in the dark, they may complain generally about something they think went wrong with their care. When they are brought into the information loop, their complaints can become more specific and more helpful.

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Tweeted by @kevinmd

"3 words that every doctor dreads: They changed this physician forever."
http://www.kevinmd.com/blog/2014/06/3-words-every-doctor-dread-changed-physician-forever.html?utm_content=buffer2b048&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

Emergency physician Brian Goldman, host of CBC's White Coat, Black Art, wants to lift the cloud of shame when medical mistakes are made, so they can be openly discussed and not be repeated by other physicians.