Tweet response for @GilmerHealthLaw

[LinksEtc]

ETA: I deleted the @Karen_Lnx twitter account mentioned by @GilmerHealthLaw.  That name/account is no longer mine.


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



FASers can ignore this thread ... just putting some links together for a tweet.   

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


Hi @GilmerHealthLaw   


Here are some links for you to consider.

I got most of them from this monster thread of mine.
Docs helping patients to surf the internet

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



ETA @GilmerHealthLaw post

"Teaching Doctors"
https://healthasahumanright.wordpress.com/2015/01/12/teaching-doctors/

[LinksEtc]

"Can a Patient Teach Medical School?"
http://33charts.com/2014/10/patient-teach-medical-school.html?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+33Charts+%2833+Charts%29


"Doctors Tell All—and It’s Bad"
http://www.theatlantic.com/magazine/archive/2014/11/doctors-tell-all-and-its-bad/380785/


Patient Engagement - what it is & is not
https://mobile.twitter.com/TomVargheseJr/status/510276679579623424/photo/1


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


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


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


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


"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


Doctors who aren’t afraid of “Medical Googlers”
http://myheartsisters.org/2012/10/02/doctors-unafraid-of-medical-googlers/


A second opinion from Dr. Google
http://myheartsisters.org/2012/04/09/a-second-opinion-from-dr-google/


"Should you bring that list of questions to your doctor?"
http://myheartsisters.org/2015/01/11/la-maladie-du-petit-papier/


"Not knowing what we don’t know: How can we help doctors?"
http://www.kevinmd.com/blog/2014/09/knowing-dont-know-can-help-doctors.html?utm_content=buffer48d13&utm_medium=social&utm_campaign=buffer&utm_source=twitter.com


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


"Both Sides Now: What Happens When a Nurse Becomes a Patient?"
https://mbcnbuzz.wordpress.com/2015/03/11/both-sides-now-what-happens-when-a-nurse-becomes-a-patient/


"Being Valued: What I learned during my first week as a Patient Director"
http://futurepatientblog.com/2015/06/09/being-valued-what-i-learned-during-my-first-week-as-a-patient-director/


"When you know more than your doctors about your diagnosis"
http://myheartsisters.org/2015/05/31/patients-know-more-than-the-doctor/


"Listening To The Voice Of The Patient In Precision Medicine"
http://www.forbes.com/sites/davidshaywitz/2015/06/26/listening-to-the-voice-of-the-patient-in-precision-medicine/


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



Tweeted by @amcunningham

Thank you for telling this story @ninjabetic1 ... you can help me to be a better doctor. shar.es/1qUtMu

---

"NINJABETIC – ME BEFORE MY ILLNESS"
http://diabetestimes.co.uk/ninjabetic-me-before-my-illness/#sthash.a540rz9z.OD5MCklm.dpbs

This week’s hot topics on social media have been about patient-centred care and also about whether or not patients who DNA their appointments should be charged, so I wanted to share my experiences, not because I’ve been asked to, but because I haven’t.

[LinksEtc]

"My lowly beginnings as an empowered patient"
http://myheartsisters.org/2012/09/16/my-lowly-beginnings-as-an-empowered-patient/


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


"When Docs Get Annoyed At Empowered Patients"
http://www.psychologytoday.com/blog/owning-pink/201107/when-docs-get-annoyed-empowered-patients


"The myth of the difficult patient: Blame the system instead"
http://www.kevinmd.com/blog/2013/02/myth-difficult-patient-blame-system.html


"On Being A ‘Difficult’ Patient"
http://content.healthaffairs.org/content/27/5/1416.full


“Good” Patients and “Difficult” Patients — Rethinking Our Definitions"
http://www.nejm.org/doi/full/10.1056/NEJMp1303057


"We No Longer Live in the 1990s
Social media, Google, and the Internet ARE Medical Therapy"
https://medium.com/@joyclee/we-no-longer-live-in-the-1990s-8c5f43f16ca0


"The patient is the most important member of the team"
http://www.bmj.com/content/350/bmj.g7767



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


"Being Weird: The Plight of Patient Leaders"
http://futurepatientblog.com/2015/07/04/being-weird-the-plight-of-patient-leaders/

Of course we can always join in at ‘the edge’ or sign up to a webinar. But heaven forbid if you get too edgy – because then you are a ‘rebel’ not a ‘change agent’. Rock the boat, but please do it gently, and do let the professionals continue to steer the boat while articulating a ‘model for change’.

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


"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.

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


Tweeted by @michaelseid11
ImproveCareNow - Co-Production
https://m.youtube.com/watch?feature=youtu.be&v=mljKTqHcdiA

&

This is what collaboration #whatifhc looks like! youtu.be/r2E4MCRdc0w - for more on @ImproveCareNow, watch this: youtube.com/watch?v=aKy7UN…

"Colson's Story"
https://m.youtube.com/watch?feature=youtu.be&v=r2E4MCRdc0w

"#GoFullCIRCLE | Watch Now, Share Now"
https://m.youtube.com/watch?v=aKy7UN9liMk


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


"Breaking a Promise"
http://improvecarenowblog.org/2015/02/12/breaking-a-promise/

“I will listen more than I will speak.” Because that’s what patients do, right? I had the distinct feeling that I would be an intruder in a place where patients don’t belong

he explained that he worried he had made me uncomfortable by challenging my opinion as a patient. In fact, he had done just the opposite. This was my ImproveCareNow “lightbulb” moment.

[LinksEtc]

Tweeted by @HeartSisters

@JBBC I asked a conf audience/300 docs: "How many of you read patient blogs?" -1 hand went up (the doc who invited me to speak) #HealthXPh

&


"Is your doctor paying attention?"
http://myheartsisters.org/2014/02/11/is-your-doctor-paying-attention/

Not paying attention is how doctor-patient trust is eroded. Many doctors are already feeling this erosion. In a 2012 Consumer Reports survey, 70% of doctors felt that since they began practicing medicine, their bond with patients has steadily decreased.

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


Tweeted by @anniecoops

"Patients teaching patient safety: the challenge of turning negative patient experiences into positive learning opportunities"
http://qualitysafety.bmj.com/content/24/1/4.long

It seems evident that before educators broadly engage patients and families in patient safety training, they will need to: (1) know more about the link between the affective impact of patient narratives and long-term learner outcomes; and (2) develop strategies to mitigate potential negative emotional and cognitive impacts on the learner and the patient or family.

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


Tweeted by @JBBC

"Patients to lead the training of doctors, at a new centre for patient experience, UK"
https://www.linkedin.com/groups/Patients-lead-training-doctors-new-6543519%2ES%2E5963272924931596289?_mSplash=1

students at the University of Manchester’s Medical School will work with patients and be assessed by them from the first year of study, so that they will better understand the patients’ needs, feelings and deliver better treatment. These ‘Medical Education Partners’ will also assess applicants to the medical school, be part of panels looking at the conduct of students and help create course materials and be able to provide feedback to tutors.

&


"The E-Patient Movement"
http://www.socialworkhelper.com/2015/02/02/e-patient-movement/

Commonly known as a “medical googler”, Googling health information or looking at WebMD is often assumed to be for “hypochondriacs” or “Wannabe Doctors”.

help create awareness on a range of issues using the hashtag #Epatient on Twitter

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


Tweeted by @drval

"Why Patient Autonomy Is Critical To Good Health Care"
http://getbetterhealth.com/why-patient-autonomy-is-critical-to-good-health-care/2015.02.24

nobody likes to be forced to do things against their will

It’s time to think about what our actions – even as small as placing a bib around someone’s neck – are doing to our patients’ morale. Maybe it starts with asking the right questions… Or better yet, just watching and listening.

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


Tweeted by @ElaineSchattner

“Empathetics,” a series of online courses...in: Efforts To Instill Empathy Among Doctors Is Paying Dividends, @KHNews khne.ws/1BpY2LP

---

"Efforts To Instill Empathy Among Doctors Is Paying Dividends"
http://kaiserhealthnews.org/news/efforts-to-instill-empathy-among-doctors-is-paying-dividends/

“Empathy training is naturally self-rewarding,” said Laurie Drill-Mellum, a former emergency room doctor who is chief medical officer of the Minneapolis-based insurer. “It gives [doctors] the love back,” she said, referring to the positive feedback empathic doctors receive from their patients.

[LinksEtc]

"What happens when patients know more than their doctors? Experiences of health interactions after diabetes patient education: a qualitative patient-led study"
http://bmjopen.bmj.com/content/3/11/e003583.full

interactions within the health system following patient education could be fraught

Patients who have in-depth knowledge of their condition encounter problems when their expertise is seen as inappropriate in standard healthcare interactions, and expertise taught to patients in one branch of medicine can be considered non-compliant by those who are not specialists in that field.

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



Tweeted by @Terry1Long

"What It Really Takes to Listen to Patients"
https://hbr.org/2014/04/what-it-really-takes-to-listen-to-patients/

To lead change in health care, organizations must get in the room the voices of real patients – people whose lives are touched by our products and services.

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



Tweeted by @AllenFrancesMD

"Do you know what your patient is thinking?"
http://www.bmj.com/content/350/bmj.h375

The way GP surgery and hospital outpatient encounters are organised—limited time, the power relations in the room—means that many things are left unsaid.

The only similarity in all these encounters is that I couldn’t tell any of those doctors what I thought.

if you are a patient or carer reading this and you are inspired to write something in the new format, please read the guidelines for authors (thebmj.com/about-bmj/resources-authors/article-types) and get in touch

&

"Don't Give Up On the Difficult Patient"
http://www.huffingtonpost.com/allen-frances/dont-give-up-on-the-diffi_b_6976824.html

I have undoubtedly learned a great deal more from my patients than they ever learned from me. And some of the deepest relationships and best moments in my life emerged with people I treated because no one else would.

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



Tweeted by @subatomicdoc

Seeing Healing Relationships Helps Us Value Them network.socialmedia.mayoclinic.org/discussion/see… #epatient #edoctor #hcsm cc @nxtstop1 @JBBC

http://network.socialmedia.mayoclinic.org/discussion/seeing-healing-relationships-helps-us-value-them/

Both patients and healers (since this doesn’t apply only to doctors) have to combine strengths and recognize weaknesses for a trusting relationship to emerge.

Trust in the relationship and an ethics of caring are cornerstones of relational bioethics advocated by philosopher of science Alfred Tauber.

&

Context, Understanding & Empathy: #IWishMyDoc & #IWishMyPatient >@coffeemommy #hcsm #hcldr

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



Tweeted by @HealthNewsRevu

Stop blaming “demanding patients” for driving up health care costs
http://www.healthnewsreview.org/2015/02/stop-blaming-demanding-patients/

“…dealing with patients who inform themselves about their conditions online has changed the usual medical relationship, according to Anthony Back, a cancer specialist at the Seattle Cancer Care Alliance.

“A lot doctors view this negatively as in, ‘If only those patients didn’t have this information my job would be simpler,’”

[LinksEtc]

What doctors really think about women who are ‘Medical Googlers’
http://myheartsisters.org/2009/08/19/med-google/

Me: “My name is Carolyn, and I’m a Medical Googler.”

You, all together now: “Hello, Carolyn!”

I became truly insufferable

I am, apparently, a doctor’s worse nightmare now.

 


Me too HS, me too.



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



Tweeted by @AllergyKidsDoc

"Why Are So Many Patients Noncompliant?"
http://www.medscape.com/viewarticle/818850_4?src=sttwit

In reality, though, the teamwork concept isn't working out too well. One reason is a chronic lack of time.

To be efficient, the doctor must control the conversation

The doctor, just as the patient, also experiences feelings during the consultation such as anxiety or anger

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



Tweeted by @AllenFrancesMD

"A SECOND OPINION"
http://relationalwelfare.com/2015/01/06/a-second-opinion/

It was easy to assume that patients would trust me from the outset. Why shouldn’t they? I had so many qualifications. But one of the strongest themes to emerge on Patient Opinion is that people build, or lose, their trust in you from the tiny fragments of evidence available

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



"Chemo or Lourdes? Welcome to Cancerland"
https://pulsevoices.org/archive/stories/436-chemo-or-lourdes-welcome-to-cancerland

I know that they are highly competent medical professionals. But the way in which they relate to me--as one human being to another--convinces me that they also understand the personal side of medicine, and that they will bring to my care not only the aim of curing but also the art of healing.

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



Tweeted by @rvaughnmd

"Social Media is the Profound Change Fueling the e-Patient World"
http://network.socialmedia.mayoclinic.org/discussion/social-media-is-the-profound-change-fueling-the-e-patient-world/

Most patients still don’t realize they can make real and valuable contributions, so, naturally, they haven’t worked at sharpening those skills. Nor do most clinicians realize that patient contributions and perspectives can be genuinely useful.

[LinksEtc]

Tweeted by @rzeiger

Medical professionals can now “Learn from Smart Patients”
https://www.smartpatients.com/blog/learn-from-smart-patients/

We’ve had an increasing number of doctors and other clinicians asking if they can join Smart Patients to learn from what patients are talking about.

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

Tweeted by @SusannahFox

"What health care can learn from Mike Mulligan and his steam shovel"
https://medium.com/@SusannahFox/what-health-care-can-learn-from-mike-mulligan-and-his-steam-shovel-def6f83b59de

Think about it: Who offers the innovative solution that saves the day in the storybook? A child. Someone outside the “we know best” adult world.

Who plays that outsider role in health care? Patients and caregivers.

&

Speak Up
The network is our superpower
https://medium.com/@SusannahFox/speak-up-6808c63459d8

I also didn’t stand up alone. I had colleagues sitting right there next to me — the Medicine X community — and I had a respected institution — the Pew Research Center — on my name tag.

But what about people who are alone or feel unqualified when they spot misinformation or an error about to happen?

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



Tweeted by @PaulLikeMe

"From patient centred to people powered: autonomy on the rise"
http://www.bmj.com/content/350/bmj.h148

A decade later pronouncements from the Institute of Medicine, the Mayo Clinic, the World Health Organization, and others suggest that patients—individuals without specialised training—should be treated as genuine, value contributing partners in the work of medicine.2 3

This movement is not anti-physician, it’s about partnership.

I speak from experience when I say that a person in trouble can be highly motivated.

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



Tweeted by @ePatientDave

"Big BMJ supplement on Patient Centred Care – with many SPM and MedX voices"
http://e-patients.net/archives/2015/02/big-bmj-supplement-on-patient-centred-care-with-many-spm-voices.html

the BMJ (formerly British Medical Journal) released a big, 21 article “Spotlight” supplement on “patient centred care.”

It brings a rich diversity of voices, patients and clinicians alike, from at least eight countries, all talking about patient-physician collaboration, in one of the most credible medical journals in the world.

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



Tweeted by @nxtstop1

Creating A Culture of Questioning-Challenge 4 MDs & Pts- #HCLDR Blog:A Beautiful Question: Questioning in Healthcare ln.is/hcldr.wordpres…

http://linkis.com/hcldr.wordpress.com/BYGOm

It was just after New Years 2015 when an an article by Warren Berger entitled “Forget Resolutions, Whatʼs Your Beautiful Question” caught my eye.

with an urgent need for close partnerships between MD and patient to achieve optimal outcomes, all those that understand both the importance of questioning and of validating the questioner will have the most success. Such validation requires patience (to focus and listen), mutual respect and trust, absence of fear and desire for mutual understanding.

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



Tweeted by @tessajlrichards

"David Gilbert: Patient as expert"
http://blogs.bmj.com/bmj/2015/05/26/david-gilbert-patient-as-expert/

patients don’t know best. They know different. Together we can work for the best.

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



Tweeted by @kgapo

A patient 1st author in paper on @ASCO's Journl of Oncology Practice?Yes,if he is @ePatientDave congratulations Dave! m.jop.ascopubs.org/content/early/…

"Open Visit Notes: A Patient's Perspective and Expanding National Experience"
http://m.jop.ascopubs.org/content/early/2015/05/26/JOP.2015.004366.full

[LinksEtc]

Re: "We know we should do ____, but instead we do ____"

Tweeted by @HeartSisters


Living with the “burden of treatment”
http://myheartsisters.org/2013/02/16/living-with-the-burden-of-treatment/

Dr. Victor Montori of Mayo Clinic describes two types of patients living with chronic illness who don’t follow their physicians’ advice when it comes to implementing recommended treatments or therapies.

&


"Patient Burnout"
http://www.nmodiaries.com/2014/09/08/1264/

When I mentioned this in passing to my students that day, it immediately got a reaction. “Patient burnout?!? That’s a THING?!? I thought just doctors got burnout?” 

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




Tweeted by @helenbevan

The outstanding talk that @allyc375 gave at #confed2015: "From patient voice to patient leadership" youtube.com/watch?v=dnhjgY… #mustwatch

https://m.youtube.com/watch?sns=tw&v=dnhjgYGbEpk


---


7:00

Do I understand how lapses of compassion can and do happen to compassionate people?

7:33

I'm a label queen

8:57

"Maelstrom of mayhem" is my particular favorite

10:08

The danger lay, though, in the gaps

18:03

I have to kind of dog myself in here as the angry patient with the axe to grind

21:15

with relationships being established between patients and professionals where the boundaries are blurred

22:03

I needed to know how to walk in the shoes of the professionals as well

24:18

I used to sit in the corner of the King's Fund, in token patient corner (I used to call it), and I used to time how long it would take them to say "we're putting the patient at the center of everything we do"

26:49

So my approach is somewhat toned down

30:41

None of us have the whole picture, we've all got essential parts of it, if you bring that together, that bit in the middle, it's where the quite gritty and difficult stuff is, but it's where the hope is, it's where the creativity is, it's where the innovation is, and it's where that social movement potentially is

(Since I quoted more than usual, I checked with @allyc375 on twitter to make sure that she didn't mind & she was fine w/ it.)

[LinksEtc]

Tweeted by @allyc375 aka "Maelstrom of mayhem"

@JBBC This video sums up what happens when we see our efforts being valued less youtu.be/lKhAd0Tyny0 #SHCR

"Capuchin monkeys reject unequal pay"
https://m.youtube.com/watch?v=lKhAd0Tyny0&feature=youtu.be



 


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



Tweeted by @AmolUtrankar

Patients as peer-reviewers: inside @bmj_latest's efforts for end-users of research to shape its agenda. blogs.bmj.com/bmj/2015/06/23… #medx #s4pm

"Amy Price and Marilyn Mann on the pros of patient peer review"
http://blogs.bmj.com/bmj/2015/06/23/amy-price-and-marilyn-mann-on-the-pros-of-patient-peer-review/

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



Tweeted by @hmkyale

For 2 long #patients' experiences absent from clinical journals; their perspective holds much wisdom. @CircOutcomes twitter.com/CircOutcomes/s…

Patient Viewpoint
The Cards I Was Dealt
My Life With Familial Hypercholesterolemia
Mackenzie Ames, BA
http://circoutcomes.ahajournals.org/content/8/2/218.full?sid=0fc1bf37-ff6a-4398-afc5-5a95400d88b8

I wanted a little more compassion. I needed a little more “care” in patient care, instead of judgments over an assumed unhealthy lifestyle. This doctor finally gave me the healthcare I had needed all along.

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



Tweeted by @HeartSisters


"I got kicked off my hospitals Patient Advisory Council... for being a patient advocate"
http://bennettgamel.blogspot.ca/2015/06/i-got-kicked-off-my-hospitals-patient.html?spref=tw

I'm left to believe that I basically wouldn't rubber stamp what the hospital wanted to do. 

I am of the opinion that the patient voice and patient experience is much more valuable than to just nod and smile.

&


@HeartSisters

Wow. Wow. WOW! Carly Medosch draws on 21yrs living with chronic illness to translate the patient experience @CarlyRM youtu.be/tBZL3oHch0o

https://m.youtube.com/watch?v=tBZL3oHch0o&feature=youtu.be


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



Tweeted by @trishgreenhalgh

"Six ‘biases’ against patients and carers in evidence-based medicine"
http://www.biomedcentral.com/1741-7015/13/200

Examples from these studies included doctors dismissing symptoms that were not explained by blood tests, ignoring patient experience that did not correspond to textbook descriptions, using medical jargon to re-establish a position of power, and actively withholding information or services. Patients learnt to conceal their own expertise and treatment decisions in order to comply with medical expectations and to avoid professionals becoming “patronizing or angry” [50], [51]. All these might be considered as examples of what has been called ‘epistemic injustice’ – that is, the numerous and often subtle ways in which patients may be dismissed in their specific capacity as knowers [52].

Herein lies a paradox: clinician-researchers are building an experimental science of how they can intervene in patients’ illnesses [84], while patients themselves are building collaborative communities aimed at supporting and informing one another

[LinksEtc]

"KAREN NICOLE"
http://facesofhealthcare.ca/karen-nicole#karen-nicole-1

"I was pretty shocked! He was retired and someone who I thought was going to be, you know, ‘Sit down and know your place. We’re physicians, and you’re not.’ It was one of the first times that a doctor spoke to me as a peer. What he said was so meaningful. I was like, ‘Okay, this is real. They really want our input.’”

----------


My open letter to “Patients Included” conferences
https://myheartsisters.org/2016/03/06/my-open-letter-to-patients-included-conferences/

I said yes for the same reason that so many patient activists living with chronic illness say yes to conference invitations: to help get the patient voice heard, and because we passionately believe that what we’re writing/speaking about is important for the public to know.

----------



Tweeted by @myopennotes

"Author Reading: When Patients Teach"
http://academicmedicineblog.org/author-reading-when-patients-teach/

Listen to authors Sigall K. Bell, MD, and Stanley R. Vance Jr, MD, read their Teaching and Learning Moments essay, “When Patients Teach,” published in the April 2016 issue.

-----------


When Patients Teach
Bell, Sigall K. MD
http://journals.lww.com/academicmedicine/Fulltext/2016/04000/When_Patients_Teach.13.aspx

Fast forward to 2010 and the disruptive innovation OpenNotes. About 100 doctors from three U.S. medical centers volunteered to share their visit notes with 20,000 of their patients through a secure online portal.  When one, an educator, found her student’s clinic performance subpar, rather than again rely on her own feedback, she pivoted. “Write an open note,” she instructed the student, inviting the patient to critique the student’s note.

As one colleague recently reflected: “There’s a lot we can learn from patients. But we don’t ask, and they don’t tell.”

----------


"WHY ARE WE DISCOURAGING PATIENTS FROM PARTICIPATING IN CARE?"
http://myidealptexp.com/2016/02/12/no-longer-does-doctor-know-best/

Gone are the days when individuals passively received health information and interventions, assuming that a provider held all the answers. It is increasingly common for patients to find resources and/or seek out additional information online.  The Information Age has ushered in a new era of shared decision making.

----------



Re: Bias