Photo: facebook.com/TheEmergencyMedicineDoctor
I can’t tell you how many people have flung this Facebook item at me since last night, starting with my wife. :-) It’s already approaching 25,000 shares.
(Update: at 11am ET on Dec 1 it’s up to 73,000 shares in 48 hours. I’d say it’s going viral…)
Listen, people: Googling does not mean I think I’m a doctor. It’s a sign of being an engaged, empowered “e-patient.”
I partner with great doctors – I don’t tell them what to do. And they welcome me doing it.
I personally am completely opposed to a patient going in and saying “I’ve decided I have condition X, and I want you to prescribe 42mg QID of medication Y.” I mean, have you ever seen the things medical students have to learn to get their license??
But I’m all in favor of a patient saying, “I have symptoms A and B, and from what I can tell from websites J and Q, that sounds like it could be M.” Explain your thinking, identify your source, and try to solve the diagnostic puzzle together: Collaborate.
The flip side is that it’s demonstrably wrong for a doctor to insist that their diagnosis must be right; the Society to Improve Diagnosis in Medicine has lots of data on that, and the National Academy of Medicine recently published a big report on it. (See SPM patient member Peggy Zuckerman’s recent spot on the NBC News item about that report.)
And to flip it again, patient engagement isn’t a synonym for “the patient is always right.” (See SPM co-chair Dr. Danny Sands’ five minute video about that the other day.)
I’m short on time so I’ll just post what I said on Facebook:
- In 2014 the Belgian government got this spectacularly wrong: their insulting misinformed “Don’t google it” commercials say at the end, “Don’t google it. Check a reliable source.”
- They’re not mutually exclusive! You can google and check a professional source.
- I say, “Inform yourself – learn what you can. And partner with professionals.”
- The wrong-headed govt commercials: dave.pt/belgiangoogle3 and dave.pt/belgiangoogle4
- In contrast, here’s the sad story of a 19 year old in the UK who died two years ago after NHS docs told her (and her mum) “Stop googling.” This year the hospital apologized after she died from something they didn’t know was possible – a recurrence of her unusual liver cancer.
It’s absolutely, demonstrably wrong for a doctor to think that doctors know everything that needs to be known and patients can’t possibly know anything useful. To the contrary, not googling can bring death.
Here’s a one minute animation published in February by the BMJ, co-produced with Lucien Engelen at Radboud University Medical Center in the Netherlands, that explains how the world of information has changed:
Googling is a sign of an engaged patient. The only reason a patient ever searches for information is because they’re trying to learn more! To smack that down is to discourage engagement. In my speeches I often say, “If someone’s trying something useful but they’re not good at it, coach them, don’t say ‘Stop that.'” (We’ve written about modern medical practices like Iora Health, where a patient is assigned not just a primary care provider but a coach they can talk to between visits.)
That’s empowering. That’s modern. That’s participatory. Do it that way.
The tricky parts of medicine are hard. Work together.
Docs and other providers: Don’t find out the hard way that you (with the best of intentions) have become a “dinosaur doc” of the worst sort – one who refuses to see that the world has changed since they were licensed. If you were taught that patients can’t know anything, take a look around. Maybe even read our e-patient white paper, the 122 page manifesto funded by Robert Wood Johnson and published in 2007, documenting the reality of engaged, empowered patients. It’s a free download on the right sidebar of this blog.
And patients, seriously: think for yourselves, sure, but I advise that you not think that gives you the training and clinical experience those licensed people have. Think, ask, engage, participate.
See also:
- Doctors and the Google Threat by Dr. Bryan Vartabedian, @Doctor_V on Twitter
- Misdiagnosis: A Chronic Condition Looking for a Cure (about that IOM/NAM report)
Update December 13
Culture change only happens when what people say changes, and that starts with discussion. So I’m thrilled at how much this rich, subtle conversation has persisted.
Here are snips from my two personal favorite responses so far:
- SPM co-founder Gilles Frydman of SmartPatients.com proposes this, which could go on the other side of this mug: “And don’t confuse my medical degree with a universal knowledge of medicine.”
- “Googling doesn’t make you an expert … but it also doesn’t make you wrong.” – summary of the whole subject, from a tweet by @DrTJamieson
That cup is interesting. I could create an equally interesting one that would simply say:
“Don’t confuse my medical degree with a universal knowledge of medicine.”
Only doctors who suffer from a lack of self-confidence will in 2015 deny the value of patients who have used the internet to become educated about their conditions. If I ever see such a cup in a doctor’s office my immediate reaction will be to leave that office immediately and look for another doctor.
Any doctor who has seen 1 unusual medical case in her career will know they need to work in tandem with the patient/caregivers to produce optimal care for the patient.
I am not even going to engage in patients are not doctors. It’s a false problem.
Yessir, I believe most of that is part of what I said in the post. :) Once again we align. (Mostly.)
where can I buy that mug??!!??
I’ll be blogging the answer shortly.
I agree with all you said Gilles and I myself, if I were sick and had the luxury of choice, would seek another doctor’s help if I saw such a mug on the table of my first doctor. In fact if all such physicians declared themselves by putting this mug on their table for their patients to be warned, that would save everyone a lot of time and frustration on both sides.
As a physician (medical oncologist), I find that patients who take responsibility for their own health and do their own research, easier to communicate with and so consensus on the approach to his current health concerns is reached sooner.
Other patients who maybe out of fear of so many uncertainties and how their lives may change from a life threatening illness, or out of having preconceived notions that “doctors know best”, arrive at the doctors clinic expecting to be told what to do, and trusting this is what is best for them. These are the patients who may be comfortable with a doctor with that mug on his table. Such patients are many times harder to involve in their treatment planning because that is not a role (as an empowered patient and not as a passive patient) they expect or manage to play at that point in their life.
I have no mug on my clinic table, but if I did, I wonder what it would say? Any suggestions?
What should such a mug say? Off the top of my head, “How can I help you learn?” Or, Danny Sands asks patients, “What websites have you found useful?”
You have a copy of Let Patients Help, yes? Turn to Part 3 and see Danny’s ten things doctors say that encourage engagement.
Mugs aside. You people have to think of reality. When a primary care doc has 8 minutes to see a patient —thanks to the dictates of NON-MEDICAL administrators (in this brave new world of corporate med)— don’t expect me to page through 40 pages of website print offs. Just don’t. I will summarize why you are right or wrong, but I’m not going to engage in a half hour conversation about it with you unless you want to get permission from the administrator/overseer and pay money for my time. Patients wanted docs to be out in their place. They got it. Say hello to your new healthcare manager. She has absolutely no medical training or medical ethics, but she is directing your care- and by god its gonna be profitable.
Hi John – I absolutely support your point about money getting in the way of healthcare! Yes, that is a “mugs aside” issue … this mug has to do with googling VERSUS a degree.
I hope it will give you hope to read what the google-friendly docs in these comments have done.
Please also see my note, in this post, about Iora Health, which gives patients a health coach as well as a PCP. That way, the coach can help the patient through their googling, so what reaches you is a more informed patient (as docs like Luks have noted in these comments).
Again, I completely agree that money gets in the way of healthcare.
As far as I can see, or as I understand, the mug does not say that one should not google or engage. In my view the mug exposes an existing problem, namely not only doctors but also patients can be arrogant and misbehave by overrating their medical knowledge.
I would love it if doctors would simply offer 2-5 “good” Google sites, which they find credible, so that their patients could as a minimum develop a common vocabulary with their doctors! With this approach, the two parties have immediately increase their respect for one another, and can clarify their respective goals.
At an appointment, I do not expect the doctor to guess why I have arrived, nor what my symptoms have been, what my health history is, nor what the earlier scan reported. I do expect him to ask me why I have come, what my experience has been and what concerns me most. The diagnosis requires thorough and effective communication, with the patient’s Google search evidence of his efforts.
The patient who is actively seeks an understanding of his illness or symptoms (translation: Googling it) is not disrespectful of the doctor. Rather, he is presenting himself as a patient willing to learn, to take some responsibility for his health, and to be an involved, likely compliant patient.
And from a movie about a sports agent, what’s wrong with the doctor and patient saying to one another, “Help me help you.”?
This kind of mug, and its sentiment, will be obsolete and even quaint within a year.
Post-Google differential diagnosis technology, like the future, is already here – it’s just not (as William Gibson put it) evenly distributed :)
As one example, my company, Physician Cognition, has created an algorithm that far exceeds anything to be found on Google, WebMD, and other “symptom checkers”. Our own doctors and doctors among our users report that in key ways, the algorithm outperforms them – which is the best possible backstop against cognitive error, the #1 cause of misdiagnosis.
The apps designed primarily for clinicians (and committed patients and caregivers), Xebra™ Pro, will be out in a matter of weeks on Android and iOS. They’re downright amazing. The less user-friendly beta web app is already available at http://beta.physiciancognition.com.
And the lay-friendly app is on its way!
All are without charge, which is why I hope you will all try it out, and benefit from maximum empowerment.
Cameron
Medical personnel who want control over every aspect of a patient’s life are trying to control their liability. This extends to every aspect of the patient’s life and has nothing to do with superior knowledge or clinical experience. It’s a power trip pure and simple.
Dave I applaud your comments that patients should be engaged, empowered and educated AND respectfully acknowledge the diagnostic potential of the doctor who hopefully has a wealth of knowledge. But I would be careful suggesting possible diagnoses to anyone, including doctors, until the symptoms have been discussed and the doctor has been given a chance to formulate a diagnostic opinion. As a doctor, when I am in the patient role I notice how easy it is to guide the doctor in front of me merely by suggestion of a diagnosis or possible treatment. Shy away from biasing your physician to ensure the best possible clarity. Just something to consider.
Paul, you’re talking about “diagnostic anchoring,” right? If so, as I understand it, that’s always a problem, right? Your point is well taken.
I wonder if this is less of an issue when the relationship is strong enough that the doc knows that I’m just asking. Maybe it’s not. Thoughts?
I imagine your relationships with docs might be quite different. OTOH, see the comment below by SPM member (and medical oncologist) Trixie Tiangco, about her own interactions with her docs.
“Please do not confuse your medical degree with omniscience.” PARTNERSHIP, not paternalism. Lather, rinse, repeat.
As a journalist interviewing folks of all walks of life, folks who could easily, non-defensively say “I don’t know” were among those most likely to win my confidence. The same is true of doctors – those who say “I don’t know, but let’s try to find out,” or “I can see why that looks like your situation, but here are some medical reasons why the two scenarios are didferent” are going to be more trusted and useful advisors than those who say “Never heard of that! Who told you that?@$!” Excellent doctors are committed to life-long learning and are interested in science, and when words and attitudes suggest otherwise, it’s time to find a new MD.
Agree with everything you say about consumer/patient expertise and of clinicians embracing, not denying, Those Who Look For More Information.
Me thinks the Mug statement confuses. It’s a cognitive thing…
The only reason to discourage patients from helping by bringing information, perspectives and questions to the table is if one is more interested in being in charge than being successful at helping the patient.
For those who don’t know, I’ll note that it’s Peter Elias MD (not an “all medicine is corrupt” person), and he’s a member-at-large of the board of our society. He first learned of participatory medicine a few years ago, and said he’d always been practicing that way and just didn’t know it had a name.
From Dr. Don Berwick’s speech “The Epitaph of Profession:”
“The new professional — the professional we need — is equipped, as my father, on the whole, was not equipped, with attitudes, skills, and knowledge like these:
…
– Embrace of the authority and autonomy of patients and families in a wholly new distribution of power and knowledge. Some say that doctors and patients should now be partners in care. Not so, I think. In my view, we doctors are not our patients’ partners; we are guests in our patients’ lives. We are not hosts. We are not priests in a cathedral of technology. I have heard sarcastic doctors refer to the knowledgeable patient as ‘internet positive,’ as if that were a challenge or a mistake. It isn’t. It is self-efficacy beyond anything my father could have imagined.”
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2629825/
Well said, Dave! Interestingly, a medical degree won’t mean much for a patient with narcolepsy, a serious neurological condition effecting 1 in 2,000 pple around the world. Even at a “good” med school, sleep medicine is limited to 1-2 hours tops, which may include 5 minutes on narcolepsy – laughing at videos and learning the most basic symptom names. In which case, I WON’T confuse your medical degree with Google – I’ll just choose Google. Which is actually how I learned I had narcolepsy after 2 years of asking doctors and med students…
Partnership, collaboration, respect, humble attitudes, and shared compassion and kindness for each other – that’s the way forward! No one knows all, we are all trying our very best.
^ as with other rare and underdiagnosed diseases. Which, ironically, doctors are less likely to believe in, particularly if the patient suggests it. Ask me how I know. (And, yes, thankfully I found a great immunologist.)
As a person with comorbid complications my physician’s and I appreciate that the entire team becomes confused in the matrix of differential diagnosis; inconsistent episode of care management rules, differing formularies, payment responsibilities and treatment goals. (if that sentence confuses anyone I will expand on the meaning if requested as these are real terms across industry stakeholders).
As the CEO of my health (I call this self mastery) I hold the responsibility for defining my own standards for well-being, presenting them to my physicians and figuring out how to pay for the treatment alternatives presented.
It has taken a lifetime of clinic visits (since age 10) with little help from the professionals in the system of care as to assuring I know how to procure quality service or even define what quality service is! I do give credit though to two physicians, both pediatric endocrinologists who took their time to empower me with very simple words “the complications are optional Jeff; if you work with us we will work with you”. Allot for a little boy to take-in but the honest truth was necessary since they recognized I grew up on a bar-stool sitting next to mom.
So young man (I am assuming gender through my bias on male egos) you probably were not born when I was diagnosed. Nor were you around when our best method for control was a high fat diet, urine sugars and pork insulin. Yes I understand renal threshold, Dr. Lipman taught me about it at age 10 in 1966.
In 2010 My primary care doctor (age 34) told me that I knew more about my diabetes than she did, once more placing the responsibility of control on me; and in 2015 I found the medication (Harvoni) through reading about hepatitis C trials online; went to my doctor who did not know about the drug who promptly sent me to a GI hepatitis specialist. Today, I am hepatitis C free. Yes Sir not one strand of viral DNA left in my body all through the miracle of Google…Scholar that is!
As for silly coffee cups; I attribute their commentary to threatened egos, developmental delay and immaturity.
Beautifully said, Jeffrey. Your experience offers so much to the discussion. Thank you for sharing. I may steal your phrasing “CEO of my own health”!
Great summary Dave. Unfortunately the topic of physician frustration with patients Googling still comes up, because we haven’t really scaled up the practice of the physician-patient partnership. And now, articles really do speak of replacing physicians in the near future for specialties where artificial intelligence will do better, such as identifying medical images, comparing EKG…Solution: Recruiting everywhere new kinds of medical students who experience a new curriculum and whose economic incentives are aligned with patient partnership.
Some MDs have lengthy, time consuming commutes. Add medical records, and their time for research on new drugs is almost gone.
Pharma reps are not about to stress a serious negative of some meds.
I have 15 pages of info from reliable research hospitals going back for years on a med suggested to me. Who can do it alone?
The reason doctors have this attitude is because they don’t have time to listen to patients prattle on about their pet theories. I’m not a doctor, but I am a patient, and I have to wait in the office longer for my appointment because of patients who go before me who yak and yak about this and that disease they think they’ve discovered.
Hi Kyle – I’m obviously in no position to disagree but I wonder, how do you know this, if you’re not in those appointments?
As a nurse, I encourage patients to become more informed about their diagnoses. Searching the Internet for a better understanding of a disease process can be useful, but research is ideally coupled with some sort of knowledge base. I have great respect for patients who are well-versed regarding their conditions, but I have also encountered MANY patients who know the medical jargon but have no idea what they are talking about.
When I was ten, I read about Greg Louganis hitting his head and bleeding into the Olympic diving pool. The article said that there was a minimal risk of his spreading HIV to others, as the chlorine likely killed the virus on contact. I thought to myself, I’ve cured AIDS! We just need to use chlorine to treat people with HIV! You see, I had new information but no basic understanding of how the human body works or responds to chemicals. I had no context.
Physicians do not know everything about everything, but they DO have context. The best physicians will admit when they don’t know or don’t fully understand something. The best patients will do the same.
Thank you, K Jordan! This is the best comment on here. You are exactly correct- being able to Google symptoms really means nothing if you don’t have a good understanding of the human body- which takes YEARS of sleepless nights to accomplish- as well as years of on the job experience! The cup means exactly what it says- and I plan on getting one for my desk! How many times have I seen someone with CTS who INSISTS I need to do a “complete BODY MRI” because they most certainly have MS (they read somewhere on Google that you can have N/T with MS..)
Hi, K Jordan and Neuro Onc – just for the record, I hope you’ve read the full text of my post and all the comments here. Nobody here is saying “patients are always right,” and I explicitly said I don’t go for patients telling their medical professionals that they know what’s best.
In my view the most important comment here is the first one, from Gilles Frydman, creator (in 1994) of ACOR.org, the cancer patient listserv that contributed to saving my life (according my oncologist, David McDermott at BIDMC): he said the flip side of the mug should say –
“Don’t confuse my medical degree with a universal knowledge of medicine.”
Nothing we say on this site belittles good physicians. Some physicians are not good, and some are subject to extreme delays in being current on their information. As I often say in my speeches, it’s no insult if a less trained person has seen information the clinician hasn’t; it IS an insult (to science!) if the clinician denies that’s possible.
Please do read what the post says, not just the mug. And remember, this is the society for *participatory* medicine – patient clinician partnerships.
Which, by the way, is what the IOM explicitly called for in its 2012 report Best Care at Lower Cost – it the summary table in the executive summary: “Patient-Clinician Partnerships” with “Engaged, Empowered Patients.”
You can go tell all 1200 of them they’re wrong, if you like. :)
Nobody has a monopoly on “the” right answer. We all need to work together to find the right answer – over and over and over.
K Jordan, I agree – sorry I didn’t get to digest your comment a week ago when you first made it. I EXACTLY agree with your points, including the twin “the best will” remarks. Thank you.
A great reply on FB on the original post:
Nathan Trzcinski
Please don’t confuse my PubMed and Internet research with simple Google searches.
For years, I saw countless specialists who misdiagnosed and mistreated my conditions. Thanks to Google and various forms of medical resources and literature (and even random blogs), I diagnosed myself for 2 of my conditions (Ankylosing Spondylitis and Crohn’s); I was later proved correct through proper testing with MDs.
In fact, my first experience of this was with a specialist who argued with me when I insisted I had every symptom of Crohn’s. He told me I just needed more fiber –he did no testing and offered no other advice . Due to my inexperience, I trusted his medical degree despite what I had found via Google, and later ended up with severe symptoms resulting in surgeries and years of hell-on-earth.
After several unsuccessful attempts with traditional chemotherapy/biological drug treatments, I eventually used Google (among other resources) to research diet and lifestyle changes. Now, I no longer suffer from Crohn’s symptoms and take no medication for it.
Of course, my story is easily written off by those with medical degrees as anecdotal. Ironically, do some Google searches and you’ll find my story is not atypical. Medical degrees are great in the right hands, but are not inherently great indicators of a good doctor. Throw your mug away. Google saved my life.
Where can I purchase those mugs? Have some physician friends who might appreciate them.
Seth Mnookin’s “One Of A Kind” 2014 New Yorker article is worth reading. It goes hand in hand with Nathan Trzcinski’s comment.
This kind of mug, and its sentiment, will be obsolete and even quaint within a year.
Post-Google differential diagnosis technology, like the future, is already here – it’s just not (as William Gibson put it) evenly distributed :)
As one example, my company, Physician Cognition, has created an algorithm that far exceeds anything to be found on Google, WebMD, and other “symptom checkers”. Our own doctors and doctors among our users report that in key ways, the algorithm outperforms them – which is the best possible backstop against cognitive error, the #1 cause of misdiagnosis. I can tell you it would have greatly reduced my mothers’ own suffering.
All are without charge, which is why I hope you will all try it out, and benefit from maximum empowerment.
Cameron Powell
CEO and co-founder
Physician Cognition
C’mon, gang. Nowhere does this say or mean “Don’t Google your symptoms.” It just means “Don’t confuse what you find generically online with medical knowledge specific to your case.” Lighten up a little–laughter IS the best medicine, after all!
I agree – but if you look at the tens of thousands of comments on the original Facebook post, it’s easy to see that a LOT of people are hearing it that way. (Plus, at least one commenter hear complained about googlers wasting his doc’s time.)
We must staunchly debunk this – specifically, we must carefully describe reality, which is what I tried to do in this post.
Yeah I’d be dead right now if I hadn’t googled. The thing is, smart people use google with discrimination and get guidance out of it. I was able to help myself on many multiple occasions, and help my doctor who didn’t know how to help me. I have always taken my findings to a doctor and said, could this have anything to do with me? It either did or didn’t but it helped us get somewhere with the little time we have. Most of my doctors have been willing to work with me this way because it improves my outcome and it’s preferable to me being completely on my own with the internet.
Perfect! You are who we built our technology for. Please bookmark our free resource – it goes well beyond Google: http://xebra.physiciancognition.com
Cameron, I’ve decided to allow this comment (and your other), but I caution you to keep it non-commercial, so I removed the promotional-smiley parts.
Dave,
Just to add to the conversation, I like to remind people that MLA (Medical Library Association) offers a list of top health websites here: http://www.mlanet.org/p/cm/ld/fid=397 and also provides guidelines for assessing medical sites on the Web.
I think if patients can start the conversation with “via information sources recommended by a medical librarian, I found …”, they’ll get a better reception from their doctor. Still, I’m well aware that there are useful sites above and beyond what a medical librarian may suggest.
For the record, I’ve never had a bad reaction from a doctor when I refer to information I’ve found on the Web and I’ve been doing it since at least 1996!
Thank you Janet!
Dave, your reply is terrific.
Maybe we can get it as an insert into those free pizzas the pharma companies bring to physician offices for lunchtime CME.
Michael
HA!
When I speak to doctors at atrial fibrillation medical conferences, my suggestion to them is to select some credible sites that they trust and give those links to their patients as good resources. Patients need information to clarify what their doctors are saying to them and they need emotional support, and their doctors should be providing them with resources they trust. I provide the doctors with a wealth of information to help them select sites to share with patients. I especially encourage them to become familiar with the HON code from the Health on the Net Foundation, which does an annual audit to ensure that the sites meet the 8 guiding principles for a trustworthy and credible medical web site.
Mellanie
When I developed shingles, it first presented with severe wrist pain, and the physician’s assistant diagnosed it as a sprain and suggested a brace and ibuprofen, which helped. Then, a few weeks later, I developed a rash on my back and the next doctor thought it was poison oak. Late that night, with my skin suddenly on fire, I googled “skin on fire” and the Mayo Clinic site suggested shingles… which is what it was. When I told the doctor “Dr. Google says it might be shingles” he laughed and said “good googling is a skill.”
More seriously, in 2007 I had an extremely rare bone cancer–800 new cases of chondrosarcoma each year in the US, two-thirds of them in men over 70–and I was 51 at the time (and I’m female). I know way more about chondrosarcoma than any (primary care) doctor I see. They are happy to do some research if I ask them to–but the fact is, they’re busy, and I’m probably the only patient they have with chondrosarcoma.
All that said–I have never encountered a doctor who ignored what I said about my health.
Patients who Google health information should take a course in statistics and evidence-based medicine!! Go to AAFP.com if you want credible information, not a search engine or ‘medical site’ that makes money off of ‘clicks’ and ‘fear’ – I see little quality information brought to me by my patients – at least have the integrity to locate quality information from an unbiased source!!
Brett, a few points. I will be a bit blunt and direct here, hoping that I’m only matching your intention.
First, if I understand you correctly, you seem to be saying that when someone googles, it’s equivalent to making the decision, right? (If not, I don’t see the need to understand statistics.)
What I do, and I see good e-patients doing, is bringing THOUGHTS to the doctor and asking “What do you think?”
[I assume you’d read this post before commenting. In it, I said I don’t approve of patients coming in and saying “I have X and I want this prescription.”]
Second, please read the other comments on this post. You will see numerous cases where the patient figured out a difficult diagnosis, which the physician had not been able to get to.
I’m going to guess that a contributing factor in each case was pressures from the money companies (aka insurers) to limit how much time their trained mind gets to spend on each difficult case… happily, the patient faces no such pressure, and can spend as much time as they want googling, even when the answer doesn’t come easy.
It’s a good thing when patients help overworked doctors, right?
Third, re taking a course in statistics and evidence: I’m sure that you, being knowledgeable about the fine points and challenges of medicine, are aware of these difficulties:
– Many physicians themselves have had precious little training in statistics. My first eye-popping realization on this was 7 years ago on this blog:
Making sense of health statistics cited a great paper, including a test question that was given to 160 gynecologists and 79% gave different wrong answers, varying from 10x too high to 10x too low. (Go look at that post, please.)
Are you recommending that such docs cease practicing until that’s fixed?
– The evidence you say we should be trained to understand is often corrupt or scientifically weak. I can point you to statements to that effect by Richard Smith (25 year BMJ editor), Marcia Angell (long-time NEJM editor, and, just this year, Tim Horton, editor-in-chief of Lancet.
You are aware of these indictments, yes? (If not, I can dig up the links.) What is your advice for both clinicians and e-patients on how to cope with this? I certainly agree it’s important to understand evidence, but it’s not as simple as “just listen to the doctor.”
btw, I LOVE the idea of the AAFP and our Society working together on a good training that AAFP members could offer to patients, to teach them how to do it well! Love it!
Brett,
While AAFP has a lot of good content (and we really like our colleagues at AAFP), I was distressed to discover that there is no mention on the site about the latest guidelines for my condition, atrial fibrillation.
The site mentions the 2011 AHA/ACC/HRS Updates to the Afib Guidelines, but not the new 2014 AHA/ACC/HRS Guidelines for the Management of Atrial Fibrillation that were released March 28, 2014. Thus, a patient relying on that site would have obsolete information, which is particularly dangerous as the scoring tool used previously for determining stroke risk was thrown out in the new guidelines in favor of a new, more accurate tool.
In contrast, patients relying on my site (StopAfib.org) for afib information would find a video interview I did with one of the authorities in the field who was a member of the guidelines writing committee who discussed the changes in the new guidelines. And the interview was so good that the web site that we collaborate on with American Heart Association includes that same interview re-done to the American Heart Association standards.
The point I am making is that there are a lot of patient sites that are more up to date than the medical society sites. In fact, we recently advised our friends at one of the medical societies about some inaccuracies in their information for patients.
And doctors in our field tell patients to visit our site first as it is the very best resource for atrial fibrillation (better than many of the sites you would think of as authoritative). Thus, I encourage you not to diss non-medical society sites – there is a lot of quality out there among sites that are not interested in clicks or fear, but in serving their patient community.
Mellanie
[Disclaimer: I was a guidelines reviewer, and as far as I know, was the first and only patient involved in AHA/ACC/HRS guidelines; thus, I am very familiar with the new guidelines.]
Brilliant and well worded reply, Mellanie. Thanks.
Thanks, e-Patient Dave.
Let me also point out a wonderful tool for doctors in understanding cardiac arrhythmia patient preferences and which contains links to the most authoritative arrhythmia resources for patients.
In June, the European Heart Rhythm Association (of the European Society of Cardiology) launched a consensus document, Cardiac Tachyarrhythmias and Patient Values and Preferences for their Management (http://europace.oxfordjournals.org/content/early/2015/06/23/europace.euv233). I was privileged to be a patient co-author of this document, which involved clinicians from around the globe and was endorsed by medical societies worldwide. It dealt with what clinicians need to know about patient preferences (totally ground-breaking information) as well as the most authoritative resources for clinicians to provide patients to learn about their condition.
Mellanie
!! Mellanie!! Have you seen this and responded?? Sounds like you should!
BMJ seeks more patients to be reviewers on articles about their conditions
Dave,
I have planned to apply and will do so today. My challenge, like yours, is finding the time to do everything that I would like to do. I still owe articles to several major journal editors and co-authors, and hope to get to some of that during the holidays when things slow down a little. Thanks.
Mellanie
Googling assists patients who find themselves acting as case managers for their own case.It assists them in being able to talk to doctors in their language, allowing them to convey to one doctor what another doctor said but probably did not chart.
There is a vast disconnect between the environment where physicians receive their post-medical school training (inpatient) and where they thereafter commence the practice of ‘retail’ (outpatient) medicine. Treatment of patients in hospitals is a collaborative effort, both among doctors of the same specialty and between doctors of different specialties. They may not often come together face-to-face to discuss patients but they are brought together via the commonality of a single patient chart which everyone can access to see what others are doing and what they are thinking.
Outpatient medicine is a much more solitary affair. Doctors in different specialties rarely communicate with each other about a particular patient nor does the primary care provider have the time to try to piece together reports from specialists, even those to whom they have specifically referred their patients.
To the extent there is a team approach used in outpatient medicine, it is less like a football team where everyone’s role is complementary to each other, and much more like a bowling team, where each team member rolls the ball down the lane independent of other team members.
Brilliant and well written!
I want to add something here that may warrant a separate blog post: I wonder if E.R. (or E.D.) docs get a special flavor of this issue. That’s relevant because the original poster of this was a British E.R. page.
I’ve heard that ER docs have no relationships with patients (with rare exceptions) – they entirely encounter strangers, and, commonly, people who don’t have a PCP, which might self-select them to be lower socioeconomic status.
I wonder too if the issue is better or worse when it’s an ongoing relationship, vs when the money companies (aka insurers) insist on mixing and matching patients and docs so that it’s often two strangers in the room, which destroys any chance of either party trusting the other one to be sane, not be jerky, etc.
Dave,
Bruce Kimzey did an excellent job of describing environmental context as a variable to consider when troubleshooting systems issues (per our discussions) in healthcare.
The communication technology, F2F interactions and team dynamics differ as a patient moves from ER to In patient, to post acute rehab, to skilled nursing to home health to ambulatory clinic as an example of a trauma case moving from day of accident through independence in community.
Everything is different. Billing mechanisms, charge books, length of stay rules, services covered, you name it. This is why E patients are often referred to as their own case managers. It is the only time case management is in pure interest of patient. When CM exists in hospital and care venue or payer context there is one goal: minimize loss maximize profit. Even in NFP.
One exception… When case managers ore care coordinators are attached to primary care practice as in PCCM models. This is where we hoped we would go with interoperable records with a single plan of care shared among all clinicians and support community that are permissioned by the patient.
Buried deep below the comments I made above are the errors in American Healthcare Core Principles that keep the dysfunctional, complex system stable and all so pointing fingers at each other as opposed to the invisible elephant.
Your thought to move this topic out is a good idea since so much has been uncovered hear relating to physician patient relationship by location of care and payer and whatever else…
My most pleasurable career experience was as program manager in post acute rehab. It was awesome to sit with patients and families and all treating clinicians every week to adjust goals, treatment strategies etc. I had a full 10 years of seeing patients and treatment teams depart company with smiles and tears.
I like what you said, Dave. You are the informed person-patient (MPOA-Family Member) that makes my job as a physician easier and much more pleasant. When working WITH informed and motivated people and pateints and I hit obstacles in diagnosis and treatment, in helping develop an effective care team and care plan, and in helping to coordinate care, I can count on folks like you to help get around the obstacles.
“Always certain and often wrong” is a common, disturbing and dangerous posture I see especially among inexperienced physicians and providers, and in other folks in training. Hard to create effective teams with people in this mode and some can not be taught, trained or effectively coached beyond that attitude. Best to work around them.
You are fortunate. Why? You have “Reliable Physician Partners” on your Health and Health Care Team and that is the way it should be … must be … if WE are to get best health and health care and treatment.
http://www.veritashc.org/battery-explosion-need-reliability-self-reliance-reliable-partners-health-health-care/
To stay on the positive, cooperative & corrective track, why don’t we develop a blog that describes and lists the characteristics of an ideal physician partner in the digital age?
“What People and Patients Want From Their Physician in 2015” ?
What are “The Characteristics of a Reliable Physician Partner” from the People-Patient POV? Let’s discuss and hone it, till we get it into a format that can help drive positive changes.
And, while we are at it, why not generate a list of things that people-patients can do to help their physician-providers deliver nessary and best health and health care and treatment despite the complexities, conflicts and inadequacies found in The Business of Medicine.
This issue, the disparity between what people-patients need and what physician-providers have the capacity to deliver has been lingering and growing worse for decades. This is one of many opportunities for SPM to embrace Cooperation on the path to drive positive changes in and alternatives to business as usual in The Business of Medicine. By working together, People-PatientsPhysician-Providers can help fix and create better alternatives to “what is” The Business of Medicine.
Let’s get on with it.
MFM
Better yet, let’s start a workgroup (not overly formal) to discuss & debate the characteristics of a great clinician partner, and as possible haul in other partner organizations so we can have widespread agreement and publicity. Whatcha think?
Anyone else out there interested in this? Maybe this mug can start a useful action.
I am 100% in on this, Dave.
MFM
Patients, in particular patients battling advanced disease such as malignancies have enough to contend with physically & emotionally. Yet, these patients are the most vulnerable to being overwhelmed & dangerously misinformed by information extracted from a multitude of medical information web sites & social media sources.
This challenge for patients is invariably amplified for molecules in clinical trials, where the strength of evidence has not yet been completely vetted.
What patients need are simple visualization tools created by drug development experts who are agnostic to a biotech or pharma company’s share price. These simple visualization tools will help patients considering enrolling in a clinical trial or whether to take an approved drug to better understand & Cross-compare their medical options thereby gain confidence to make informed decisions that minimize their risk of “false hope.”
Otherwise, patients are potentially playing “Russian Roulette” with their lives.
There are ways to build companies that exist where caring purpose & drug development experience converge to simplify one of the toughest decisions faced by patients and their loved ones contending with horrible diseases.
Hi John – thanks for your additions.
Of course what you say is correct – there’s garbage, sometimes toxic garbage, on the internet. What is a patient to do? Stop searching … or seek professional help?
I urge you to review the work of pediatrician Wendy Sue Swanson @SeattleMamaDoc, who says “There’s crap on the internet. We can’t stop that. It’s our job to get out there and balance it, with GOOD information.” She blogs, she YouTubes, she does everything she can. Google her to see.
And look at the work of orthopedist Howard Luks, who just commented on this post too. See how he both publishes good information (to a global audience) and uses Google in his practice, teaching patients how to be better informed.
Then there’s OB/GYN Jeff Livingston, @MacObGyn on Twitter and Facebook.
It’s a new world. Yes, there’s garbage on the internet, but as Pew Research has long shown, just about everyone is out there googling, and the most effective way to move forward – not hold back the tide – is to teach. I hope you can see this perspective, especially in light of these docs who are doing it so well.
And Dr. Bryan Vartabedian – in this post I mentioned Bryan’s post about this mug. Excerpt from his:
“…this is something I would have expected in 1997. … Patients now seem to have a more mature relationship with information. In my daily practice most seem to recognize that information can’t be equated with knowledge or wisdom. Parents seem to have a good sense of where information fits into our relationship.”
Interesting that both Dr. V and Dr. Luks both mentioned that this seems to be an anachronism and that they take for granted that today information is “the third party” in the room.
I would have expected to have had this discussion circa 2005.
Google is virtually an integral part of my practice by now. I fully expect that most of the patients I care for will have researched their symptoms or MRI diagnosis before coming into my office. Often times it is the information that I put onto my blog that comes up :-)
If a patient is having difficulty finding information I will give them a few keywords as well as various websites where they might find useful information.
An educated patient makes the encounter proceed much more smoothly. They already have some background information. It is very very rare when someone will come into the office and insist that the diagnosis is X and that they want Y. I can help them by putting the information they gathered into context… to complete the clinical picture and explain how that affects the various treatment recommendations.
Images are very powerful teaching tools… I will utilize Google Images in the office with most patients … and we have used Google Translate (with consent) with many patients.
Information is truly the third person in the room with us and our patient … our role is evolving as we need to recognize that, and design a workflow in our clinics to help put the information in context and make it more meaningful and actionable.
If more and more docs, therapists, athletic trainers, social workers and nurses would write more, then the quality of the information available would improve dramatically. As of now … my site seems to serve as a second or third opinion for nearly 13,000 new visitors each day. By the gist of the comments left … many of the questions these people had were either not addressed during their initial encounter or perhaps it was forgotten. Either way … we should choose to be part of the conversation not only to foster our own relevance but to assist the millions of people in the world clear their windshield of doubt.
Howark Luks – there needs to be more of this this type of thinking & it should start in med school:)
Some wonderful comments here.
In terms of Dave’s excellent suggestion of having an SPM dialogue with the AAFP or other medical groups, I’d like to suggest as a structure an invited commentary I wrote for the Journal of General Internal Medicine. It noted that “patient-centered care” was never a goal pursued by patients: what patients demanded was shared power. What model was there? Rhetoric about patient input as a “blockbuster drug” doesn’t address the core issue of an ongoing relationship that embodies some of what we’ve seen from folks like Danny Sands, Howard Luks and others.
I suggested building on the “enhanced autonomy” model of the from the 1990s by medical ethicists Quill and Brody. It encourages patients and physicians to actively exchange ideas, explicitly negotiate differences and share influence and power. It establishes an overarching framework – “an intense collaboration between patient and physician” – and directly addresses the experience of illness.
Moreover, it is a formulation that includes patients who prefer the old ways (in a collaboration different roles are appropriate as mutually agreed upon) or patients who are far more active. Or who vacillate between roles: as our late friend and role model Jessie Gruman reminded us, the “post-chemo” patient is not feeling very participatory while lying in the hospital.
In my view, having a model anchored in medical ethics and the medical literature will save time in any sort of committee and give us a much better chance to succeed not just with the doctors who already agree with us, but with the folks who have the “Google vs. medical degree” mug on their desk. Once they agree with us, of course, they’ll all be SPM members!
I’ve done usability studies on how doctors look for information (owned by the companies I’ve worked for) but I can share some tidbits. Surprisingly docs may start at Google or even go to Wikipedia (not kidding). Then they cipher results, considering the sources before diving deeper. They are users with the same tech tendencies just like patients – that’s one of the pearls I took away:) It’s kind of a do what I say not as I do – perhaps they feel they can filter out the BS better?
I was given the stink eye by many when I was admitted & hospitalized last year. When I went back to speak to the hospital’s patient advocate, it was one of the issues I discussed with her. I am an educated, engaged patient who understands the quality of a source is important, any ‘ole search engine result just doesn’t do it.
I love sharing scientific evidence with patients. There is nothing so fun as speaking to a patient who is interested in learning the research behind what I am telling them. I even enjoy when they have read something, or heard something different from another doctor. However, research has followed searches by patients, and they always move to worse and worse diagnoses in their searches. Instead of moving to narrow their diagnosis, they all seem to end up at the “cancer” site. I get to be the hero when I tell them it is absolutely not cancer, but they waste a lot of stress worrying.
On the other hand, I am a doctor who will absolutely tell a patient “I don’t know” and look it up in front of them. I have a VERY reliable web site that I pay for yearly, but it is free to patients. Feel free to use it http://www.uptodate.com. The site is regularly updated by specialists in each area as information changes.
Great post, Renate! I love every word you wrote.
I wonder about the effect you observe, of people often gravitating toward the worst case scenario. (That’s exactly what’s depicted in the Belgian ads that I cited.) What can we do about this? Can we design a social remedy?
In my own cancer, my smart patient community was where I always went first to put any new finding in perspective. Once I’d upgraded my awareness there, I could have a higher value discussion with my physicians.
Do you have any kind of a simple patient education flyer, “How to use Internet resources wisely” or something of the sort?
I thought it was just a joke!
Culture change only happens when what people say changes, and that starts with discussion. So I’m thrilled at how much this rich, subtle conversation has persisted.
Here are snips from my two personal favorite responses so far:
In truth, what disturbed me the most in the mug post was its amazing lack of understanding of what the Internet offers. The poster equates the Internet with Google. Google is just great but it’s at most a Health 1.5 resource. It doesn’t include the content of many of the best communications between patients in peer-to-peer communities which are often and by design crawlable.
Dave usual example that his kidney cancer specialist told him he’s not sure Dave would have done so well with the harsh treatment for his RCC without the great advice he got from his peers is a demonstration of the value of this great content. Which you won’t find in Google since we blocked Google and all search engines starting in 1996.
Doctors should, in most cases, not play the Internet experts!
Who’s the “we” who blocked Google and all search engines? Oh, you mean ACOR, and probably now SmartPatients? Why?
The next entry in this exploration of what’s possible and what’s not:
“Patients organise and train doctors to provide better care” – patients writing in the BMJ”
http://pmedicine.org/epatients/archives/2015/12/patients-organise-and-train-doctors-to-provide-better-care-patients-writing-in-the-bmj.html
There will surely be a chorus of objections from earnest observers experiencing cognitive dissonance at the news of a major medical journal validating patient-clinician partnerships: “Well, okay, but that’s people with a major chronic disease. They’re motivated.”
The same sort of thing was said about early e-patients: “Well, okay, but they’re college educated.” Then people read Tom Ferguson’s white paper (the free download on this blog) and learned of people with much less education making real contributions. Then it was “Well, okay, but that’s in America.”
The truth is, what’s possible has changed. And it’s gaining acceptance.
Print out this latest comment (Dec. 13) by e-Patient Dave. Date it and put it in a drawer. Come back in 5 years and say, with hindsight, “Well, of course he was right.”
You are being a bit oversensitive on this. From your point of view they are referring to you, but I can tell you that the google cup is referring to the thousands who google website telling them not to immunize, or get any shots at all.
My wife is currently working with an infant who could die b/c the mother refused a vitamin K shot, off of a google search. Vit K being an important clotting factor, and breast fed babies (which has sooo many benefits) do not get as much as fortified formula babies and certain conditions require clotting (even circumcisions). So it is not the reasonable, well educated people who seek out Web MD, NIMH, PuBMed and others. It is for the quacks who say that Ebola is no match for therapeutic grade cinnamon essential oil(that quote comes from an FDA letter to the CEO of Young Living oils regarding statements made by his distributors) or what oil to treat lymes, or a lightning strike.
Any sensible person, and you sound like one, would be astounded at the level of stupidity that patients can exhibit- and due to certain social-behavioral predispositions, the more people see something the more they believe it to be true. So if they just google the key words they want to see, and focus on the 1% that says Vitamin K is dangerous, those few hundred articles make up 100% of their knowledge. And they ignore the other 50,000 articles stating the extreme dangers. So its more of a selective google search.
Hi, John – I welcome and agree with just about everything you said. I write these words in a spirit of honest inquiry and I hope you can hear them that way.
First, did you carefully read my post? I know it was too long for many people’s attention these days. If you had the chance, I’m sure you noticed that I never said patients know what they’re doing, and I’m sure you noticed my advice to patients at the end: “I advise that you not think that gives you the training and clinical experience those licensed people have.”
At the same time, I’m sure you also saw the points about the imperfection of some medical advice, and the anecdotes (many in the comments) of patients who clearly brought real value to the table.
More importantly, though, I think you entirely misread me when you say “From your point of view they are referring to you.” What that I said indicates that?
I’d also ask, what do you (and your wife, whom I’m sure is a great clinician) think about the other concerns in the post? What do you think about the Belgian government ads, and my observation that the two are not mutually exclusive?
Ironically I completely agree with what the mug literally says – googling does not give me a medical degree. But the Facebook discussion was full of completely stupid and rude blanket insinuations that patients are idiots, period – which is just as wrong, and dangerously so, as shown by the British girl’s death, also described in the post.
So I also completely agree with that SmartPatients founder Gilles Frydman says should be on the other side of the mug: “And don’t confuse my medical degree with a universal knowledge of medicine.”
You?
p.s. I have no patience with idiots, btw. Nothing I say EVER suggests that people inherently know what they’re doing.
A few years ago I met a woman who said “You had cancer?? You know, chemo is a fraud! All you need is properly ionized water!” Idiot.
And I recently learned of someone nearby who was convinced by a local “theologian” (self-professed) that the rain has been poisoned by some local experiments and she better not let any of it touch her – so she sat in her car for 2 hours the other night before going inside.
Forrest Gump’s mama said “Stupid is as stupid does.” That’s a separate subject from whether patients should be told not to google, and to assume that what the doc says must be right. “Trust, but verify,” in a sense.
As a middle school and high school teacher, I always found it refreshing and even delightful when a student showed me something I didn’t know, or challenged me on something. What confidence! Occasionally, I’d have to correct them if it was not accurate, but most of the time they were right. Kids love those little obscure academic details they can find. Somebody who can’t handle this is either insecure or just too controlling to accept anyone else stepping in on their turf.
As far as googling for illness symptoms, cures, etc., I do it but most of it is pretty generic. I’ve always told my doctors when I google something & find some worthwhile information. But I always promise them that I won’t automatically assume that I’m on my deathbed from a rare disease, and that I won’t insist on whatever new medicine is out there…. my doctors are pretty cautious and not likely to overmedicate. In fact, I was ill recently, and just sure I must have a parasite. But my doctor said to give it another week, and he was right. I got better. No meds needed. No parasite. No bacterial infection. Just a normal virus.
> I always promise them that I won’t automatically assume
> that I’m on my deathbed from a rare disease,
> and that I won’t insist on whatever new medicine is out there
Great, Joyce – you’re an examplar!
The only other comment I’d like to make is when someone is on dialysis and becomes sick, it’s a shock to discover how little many drs and nurses really know about ESRD and everything that entails. So, it’s pretty scary to walk into an emergency room to be surrounded by medical professionals and have them ask me really dumb questions. I’ve learned over time that the first thing I do in that kind of situation is call his nephrologist or a dialysis nurse.
I Google, therefore i am !
Or the opposite: I’m breathing, therefore (obviously) I’m googling. :)
depends on which sites you’re reading. Some of them absolutely guarantee you’re wrong…
If it weren’t for research that I did for myself on Google I never would have been (finally!) diagnosed with a rare genetic disease. My former PCP had misdiagnosed and mistreated me (which lead to a surgery I didn’t need and drugs I didn’t want to take) for about six years. I am glad Google allows us to not only do research for ourselves but to find others with similar symptoms/issues who can help point us in the right direction.
Thanks, Laura – without violating comfort boundaries of course, can you say a bit more about how you helped “solve the case” with Google?
It would be particularly useful if there’s an aspect of it that points out how the Google mug is missing the point in what turned out to be a dangerous way.
A good, concise description of your symptoms is invaluable to any medical provider. A thorough physical exam and any applicable lab test helps helps complete the picture. Asking about possible specific diseases allows you and your doctor to discuss what he or she has found and the thought processes being utilized to arrive at a diagnosis.
Where it goes off the tracks is when you announce that you googled your symptoms and have the worst possible outcome. This leads quite often to unnecessary test to cover legal liabilities. And stating that the latest fad diet is what you are sure will cure you is a guarantee to get your doctor to stop listening.Describe your symptoms, express your concerns, and then listen. If you don’t trust their judgement, then why are you there.
And if Google is your doctor of choice, then diagnose yourself, go to the internet overseas pharmacies, and save everybody a lot of aggravation.
Hi Frank – sorry for the delay in releasing your comment – my notifications got buried in the flood.
Thank you for one of the most helpful comments in this stream! Are you a clinician? Doesn’t matter (it’s helpful in any case) – just curious.
What I like is that you point to things that can be useful and things that make no sense.
I’d like to wrangle a bit about your closing sentence, though. I’d suggest that if Google is someone’s *doctor* of choice, that’s different from if someone has been *researching* online, to try to educate themselves, to have a better, more productive discussion with their clinician. Your thoughts?
I wonder – is this mostly an aggravating issue with new patients, or is it just as much a problem when the patient and clinician have known each other for some time?
Some great points Dave. Thank you.
-Having a Medical Degree doesn’t mean having a right information, especially not, being at the right time at a right place with a right information.
I feel this on my own skin two times. First time when I survive cancer 6 years ago + and second time, when I find right expert to save me from foot amputation.
You suppose what I use in this situations ?
Google Search.
-There isn’t anything in the world that is powerful like Google Search.
But it is true.
Sometimes Google shows s*itty results for Medicine queries. Here’s why:
1. Google’s ranking MAGIC don’t work if there is no relevant resources to rank.
2. Google cannot unlock subscriptions on most relevant medical sites.
If we look at this we can see that all problems Google can cause to patients is not becouse of Google but becouse of people who don’t want to share their knowledge.
-My advice to all clinicians, physicians who cares about future of medicine is simple – STOP DISCUSS ABOUT USEFULNESS OF GOOGLE AND START TO FIGHT FOR FIRST PLACE IN SERP (Search Engine Results Page).
My son was very ill and in hospital several time over a two year period. When this was going on, I would preface my research with “I know Google doesn’t give medical degrees, however, I read this…and is it possible that …” There is nothing wrong with being informed, especially when Dr’s tell you they don’t have all the answers; or when you get conflicting information…from three different doctors, three times in one day.
Long before Google(the 80’s), my husband had cluster headaches. I read an article about them and how studies had shown treating them with oxygen showed relief. He took the article to his doctor who had not heard of it but was willing to try. After a year of treating them in this way they never returned. The doctor later told him that sometimes new treatments take a while to catch up in the clinic. Oxygen therapy is now a proven treatment for the relief of cluster headaches.
I know doctors do a tough job and they have studied long and hard to obtain the knowledge and skills to treat patients, however, don’t put a patient down because they have done some research and have questions. Also, patients don’t go in with the attitude I already know what’s going on. Be a team; listen and learn both ways.
What a great comment, Tea. Thanks.
Thank you especially for the pre-Google story, which illustrates that the issue here is information, not the internet. I often say that nobody can perform to the top of their potential if they don’t have the most relevant information, and your husband’s doctor was right: sometimes new treatments take a while to filter out to the front lines. Amazingly, in 2001 a paper was published documenting that on average it takes 17 years(!) for HALF of doctors to start using new information. I wrote about it in this blog post.
An important point, relevant to this whole thread, is that in my view a doctor who really understands science and certainty will know this – including the limits to his/her own certainty, as your husband’s did. Conversely, a doctor who thinks docs inherently know all, and nobody else does, has been maltrained and misinformed. Quite ironic to be wrong about one’s own certainty!