Every few weeks someone posts some version of “Don’t confuse your Google search with my medical degree.”
It appears on Facebook, on Twitter, on coffee mugs, and on signs in doctor’s offices. Today I found out that there’s a doctor who sings about it in English and in Swedish.
Here’s one fabulous reply, written by Trisha Greenhaigh:
Don’t confuse the 1-hour lecture you had on my condition with my 20 years of living with it.
That tweet touched off an epic thread of over 500 replies, people sharing their stories about living in the unmapped regions of medicine. For example:
This is one of the heartbreaks about being autistic. We tend to love certainty and support science. Yet, we constantly face scientific and medical professionals whose credentials we want to trust but whose information has been greatly misinformed. It’s a systemic problem. – @JHMarble
And:
I have a condition that’s so rare that none of my specialists has seen it before. After dx, I asked the geneticist if we could now discuss pain management. Her response: “It’s not supposed to hurt. There’s nothing in the literature about it hurting.” – LoomesGill
And:
My consultant sneered at one of my questions and wondered if I had read it in the Daily Mail. No, the international journal of surgical pathology actually, I said and offered him the article to read. – @JennyR23
And:
My consultant once agreed to carry out a test to disprove my hypothesis. Instead, it proved it. As chair of the national committee he said I’d turned his career on its head and would write a BMJ article. Best outcomes arise when doctors and patients work together with respect. – @debimasseywm
My contribution to the public conversation has generally been national survey data showing that the horse is out of the barn on this one, at least in the U.S. The vast majority of Americans of all ages have access to the internet and the majority say they have looked online for health information. As I’ve written elsewhere, Dr. Google is, for many Americans, a de facto second opinion. For some people their best hope is to connect online with other people who share their symptoms, diagnosis, or life stage.
What I’d like to do is open a thread about our answers to these naysayers. If you’ve got a favorite study or article to cite, please share it. What evidence do skeptics need to read in order to catch up to us on the path of understanding? How might we respectfully change their minds?
Beyond data, let’s hear some stories about how a search online has led to information that helped you in some way with your health or in taking care of someone else. It could be big or small, life-changing or not. What story would you tell someone who doubts that the internet is useful — even essential — to navigating health care?
I’ll start:
On what turned out to be the last day of my Dad’s life, I used Google to search: “what does dying look like.” Dad met nearly every sign and symptom. I was alone in the room with him at the time; Mom and the nurses were taking a break. No decisions needed to be made. That’s not what that Google search was about. It was about having the information I needed to make my own choices about how to spend that day. I held his hand and stayed.
What’s your story? Comments are open.
This blog post hits the message home and out of the park. Stellar synthesis of the reality, Susannah. Thank you @JHMarble, LoomesGill @JennyR23 @debimasseywm and all those who continue to raise awareness that there is expertise in experience that has value to add in a team approach.
I am an NHS Librarian, so my article came from Medline, not Google. It is also important for doctors to remember that the patient could be a Librarian, a nurse, a researcher…. That consultant had known my profession but didn’t bother to remember, so deserved to look stupid. I have another consultant who always expects me to be up to date on new research. We have some really interesting discussions.
Yes! Clinicians should never assume that they know the training or background of the person in front of them (nor the people who surround them, such as a nephew or neighbor who is a nurse or librarian). And “Dr. Google” is indeed a catch-all phrase for all search engines, all online resources.
Thank you.
I have read some appalling published accounts of doctors mistreating other medical professionals in the clinical setting. Not even a doctor can get fair treatment from doctors; once they get sick & become a patient, the medical community sees them as one of us, just another lump of meat with no rights. Remember Michael Moore’s Sicko? There was one hospital employee who couldn’t believe how horribly her own hospital treated her husband when he fell ill. Also NPR/Diane Riem has interviewed some doctor/authors who wrote books about how badly the medical community treated them & their families in the clinical setting (I apologize that I can’t remember their names to provide citation). Not even doctors are immune to maltreatment in medicine; they also devour their own. It’s amazing how much people still worship doctors when there is so much overwhelming evidence of their failure & maltreatment of patients.
My story: I self diagnosed a recurrent bizarre skin rash, fevers and vomiting as an allergic reaction to Nexium. After seeing ID, derm and transplant specialists, and having 3 stays in hospital. The best the derms could do was give me a WebMD print out of the type of rash it was (yep, I’d already worked that out for myself) but couldn’t diagnose the cause. Thankfully Google let me know that this is a very rare but not unreported reaction. I also self diagnosed a few skin cancers with the help of Dr Google. And found my tribe of supportive transplant communities, a few good mates, lots of helpful patient blogs pre-transplant, lots of useful resources for my research career… I could go on. If a doc was holding that mug when I walked in their office, I would turn around and walk out (who am I kidding, I’d probably have “words”).
Thanks for making the jump from Twitter!
You WOULD have to ask this just as I leave for my chorus rehearsal … more later. 🙂
What I’d really like to do is lay out each such story I have in a separate comment here, which is what it deserves, just to have the 100+ stories visible in your comment count.
Here’s what I believe to be the so-far-definitive post on this, from e-patients.net: The truth about that “your Googling and my medical degree” mug, which I’ve given the short URL bit.ly/googlemug.
95 comments on that post. And these, in the update two weeks later:
• SPM co-founder Gilles Frydman of SmartPatients.com [back then] 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
Ha! And I’m about to go to a play, so comments may (hopefully) pile up until I’m back from that.
Thanks for getting us rolling.
There are many tweets and articles about UK teenager Bronte Doyne, who died after she and her mum obeyed the docs’ instructions to stop googling. The Doynes were right – her liver cancer had indeed returned, which the docs had said it could not do. SPM member (and international continuing ed guy) Ken Masters published an article calling for med students to get taught that patients can indeed know something. https://www.tandfonline.com/doi/abs/10.3109/0142159X.2015.1112896?journalCode=imte20
I say: anyone who says this isn’t possible is demonstrating their own lack of information, which is pretty dangerous in a physician!
The question is: how can we coach all (patients and clinicians) to use the internet wisely and properly, neither believing everything nor rejecting everything?
Hi Susannah,
I love that story about your Dad. Such a perfect example of why and when people turn to Google for useful help.
I’d bet my next squirt of nitro spray that, if only the Emergency physician who misdiagnosed my heart attack symptoms as acid reflux had bothered to Google: “central chest pain, nausea, sweating and pain radiating down left arm” before sending me home, there is only one plausible search result that he and Dr. Google would have come up with.
Since then, we’ve had national awareness campaigns like Belgium’s goofy “Don’t Google It” initiative: https://vimeo.com/110476768 – and those mugs keep cropping up regularly. Instead of ordering another stupid mug, why don’t physicians simply curate a list of credible online resources that they recommend their patients use to help inform their decisions, print them as if on a prescription pad, and hand them out?
Patients are already online. I wouldn’t buy a coffeemaker without Googling first – why on earth wouldn’t I Google distressing symptoms too?
Thanks for this….
regards,
C.
And Clalit, the biggest HMO in Israel, had this E.R. drama commercial, in which a patient is wheeled in with all kinds of symptoms. Wife says he was searching about his cough – “How many results did he read??” “Tens, maybe hundreds.” All the docs’ eyes rolling.
“CLEAR!” yells one doc and slams his laptop shut.
bit.ly/israeligoogle
SPM member and fellow kidney cancer patient Peggy Zuckerman commented “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 increased their respect for one another, and can clarify their respective goals.” https://participatorymedicine.org/epatients/2015/11/the-truth-about-the-your-googling-and-my-medical-degree-mug.html/comment-page-1#comment-581091
Love this example. What we dont need is further disrespect. We need way to partner gracefully.
lol oh how funny I just gave you a link to this site earlier. I hadn’t read this comment yet.
Peter Elias MD, also on that post:
“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.”
Peter learned about participatory medicine at some speech I gave in Maine, where he lives, and said he’d always practiced that way – just didn’t know it had a name.
Here’s an episode where a patient’s Google search helped not just her, but another patient. Copied from a post on my blog back in December 2013:
Anne came in for her annual health maintenance visit with great news. Her irritable bowel syndrome was no longer a problem. “I hope you aren’t upset with me, but I’m cured.”
She was a patient with long-standing irritable bowel syndrome (IBS). She had had a thorough evaluation, first by me and then by a gastroenterologist. She had had blood and stool studies and upper and lower endoscopies. Because her symptoms had seemed to develop in association with a job change (promotion) we had discussed the possible role of stress and she had seen a counsellor and followed through with relaxation training. She was on a combination of imodium, fiber, exercise and bed time amitriptyline. We had tried cholestyramine, empiric treatment for Giardia, and diphenoylate/atropine (Lomotil). Yes, she had improved on this regimen, but had remained unhappy with her symptoms.
She was still taking the amitriptyline, but largely for sleep and to prevent her intermittent migraine. She used imodium for travel, but said it was for psychological reasons – she had forgotten it several times and had had no problems. What was the solution, I wanted to know.
She had had some spare time in an air port, and spent her time googling IBS and chronic diarrhea. Her Google searches led her to a reference to a case report in The Lancet from 1995 of a flight attendant with sorbitol induced diarrhea. She described pulling her breath mints out of her purse and reading the label: sorbitol was the sweetener. She threw them out and experienced a dramatic resolution of her symptoms. In retrospect, she said, it was obvious. Her episodes of bloating, cramps and diarrhea occurred most often in association with travel for meetings, big work surges and important presentations, all times when she used lots of them. (We had interpreted this data as a stress response.
That was a very enjoyable visit. We had both been frustrated with our regular conversations about her irregularity (pardon the humor) and our inability to fix it, and we were happy to enjoy her triumph.
But it was especially nice for me, because I remembered a patient from several months earlier, also struggling with bloating and diarrhea in the setting of known IBS (and a negative evaluation) His flares seemed to be associated with intermittent periods of alcohol excess, and he had not been thrilled with my speculation that the alcohol was causing his flares. Yes, he did agree that his flares rarely happened in the absence of alcohol excess, but he often drank with no flare. What struck me that day was that he was a salesperson and therefore very sensitive about alcohol on his breath. I knew that the heavy mint to his breath was a signal that he had already started drinking that day. After work I called and asked him to look at his mints to see if they contained sorbitol. Yup, He stopped and was much better.
Listening to patients is good. Learning from them is better. Letting them help is best.
Wow! Thank you for sharing. And your last line is bumper-sticker worthy, along with E-patient Dave’s classic: “It’s perverse to keep people in the dark and then call them ignorant.”
What a great story, Peter.
And what a cultural note: “I hope you’re not upset, but I’m cured.” !
Last fall I started getting intense heart palpitations/irregular heartbeat, a ‘hard’ heartbeat that I could feel in my back, extreme insomnia, dizziness, and lightheadedness. It got really bad right before a trip to Japan, and I went to Urgent Care and my PCP for heart issues and had two different echocardiograms (which were fine.) No one could explain what was wrong; they told me to drink more electrolytes, and that I was fine.
On my 2-week trip, the symptoms stopped. I was sleeping well and did not have heart palpitations. When I got back, I started googling my symptoms and, in a roundabout way, came upon the topic of Histamine Intolerance, in which high-histamine foods (red wine, fermented foods like chocolate/kombucha/green tea/sauerkraut, avocado, and more) can cause reactions similar to the ones I’d been experiencing. Unfortunately these were my favorite foods – I’m a chocoholic and had also been drinking quite a lot of kombucha on a daily basis – but while on my trip I’d changed my diet and hadn’t really had any high-histamine foods.
Since that trip last November, I’ve adjusted my diet and removed or limited those foods, and I’ve been doing so much better. I don’t even know which doctor I would approach with this story; maybe my PCP, who is generally great and receptive to me, but I don’t know if she’d know what to do with this info.
Basically, I self-diagnosed based on information I found online, I used trial and error (and luck!) to figure out what my triggers were, and I was able to make my symptoms go away. I’m pretty sure I would still be struggling if I hadn’t taken those steps.
Thanks for putting this call out – I’ve been sharing this story among friends recently and am glad to share it more widely. 🙂
Awesome, Katie. So good to see you in DC recently – wish I’d been more present mentally but it was so overwhelming! I’d love to have the chat we didn’t have there.
Your story reminds me that as I’ve recently considered the cost and questionable value of US healthcare, I’ve asked myself what we would do in various situations if we had NO access to care. It’s surprising how often the answer comes out like yours.
Thanks Dave for the reply and nice to see you too!
Amazing story, thank you!
A histamine reaction to corticosteroids was one of my biggest medical clues to my problem. When I told my doctor I couldn’t take any steroids because I would have an allergic reaction (I mistermed it), she was so determined to prove me wrong (or make me suffer?) that she immediately insisted on prescribing me Flonase even though my sinuses were fine. She kept sneering and saying, “You really NEED it though, it’s allergy season.” I was immediately suspicious and googled it while I waited for it to be filled at the in-clinic pharmacy. Yep, steroid. I collected it, then made sure the pharm-tech watched me drop it straight into the neares trashcan. I didn’t care, I’m poor & indigent, so Obamacare paid for it. There are so many more doctors who only want to make fools of patients than there are doctors who actually want to help, and doctors who treat the poor are the absolute worst. It’s a disgusting situation.
I have an orphan syndrome. Until I moved to my current city, my doctors were dismissive of my research. Now, my GI team appreciates my knowledge and willingness to learn. It helps them treat me. They willingly admit that they don’t know it all, that they can’t know it all. For awhile, the head radiologist at a local hospital always brought his students to meet me whenever I was in the ER. He “quizzed” me each time for the benefit of his students. He wanted them to learn to respect patients’ knowledge. It makes me feel better knowing that there is growing change in this, that medical professionals are more willing to consider the patient as a team member.
Dorie, thanks so much for sharing your story – it’s inspiring!
I’m a bit more cynical. It’s probably not evidence of a paradigm shift. He probably only treats you well because he has a crush on you. If you were poor & ugly he would probably just treat you like an imbecile no matter how knowledgeable you are about your condition.
Doctors always treated me exceptionally well when I was young & pretty and had the Cadillac of insurance plans. Ever since my undiagnosed illness has rendered me poor and ugly, they treat me like a piece of dog excrement that they just stepped in and can’t wait to scrape off of the bottom of their shoe.
As a nurse and writer who contributes to Dr. Google regularly, I wish physicians and other clinicians could acknowledge that not all health information published on the web is “bad” or discreditable. My work is impeccable sourced, does not overhype claims and undergoes rigorous fact-checking. It’s also empathetic and encourages the reader to seek a clinician for bona fide medical advice. I don’t understand why this situation has to be so adversarial. Dear Doctors: I’m on your team. Let’s make these patients better.
Thank you for this. It is so incredibly true. I had fibromyalgia for two decades, and over time, found as much help from patients, case reports, and research on the net as from the doctors and specialists I saw. I tried and traded a growing number of covered Rx drugs for pain and sleep disorder for a growing number of supplements. I will share my longer story some day, it came with a side of breast cancer, and balance problems – literal ups and downs – that made me a frequent flyer in the orthopedics and physical therapy departments.
Two decades in, I was starting to lose my ability to work productively, which was deeply concerning. I then had a year of escalating neurological and dermatological hell. Third opinion consults with several specialists at leading Boston hospitals led to a growing file of wastebasket diagnoses that it was all in my head. I knew it was not. I was from a scientific family, raised by an engineer and a math teacher, with two computer scientists for siblings; and knew that illnesses had causes.
Finally, due to a functional medicine physician I saw from time to time hearing a presentation at a conference, we learned the answer to my escalating problems: reactivity to dental materials. Over the next few months, with the help of a biological dentist (I had never heard of them before, or knew they existed), I began to get my health back. My team also uncovered and treated additional overlooked, yet mundane, common causes of my fibromyalgia. I was thrilled to regain my health and vitality I’d lost for twenty years. I’m still working on a few things.
Medicine isn’t rocket science or aviation or engineering. Maybe it should be, with patients and physicians together, in real time and over the net, “working the problem” until we it out.
this is a small but huge for me, ‘thank you Dr Google’. Treatment for the condition I was (finally) diagnosed with called for a Statin. In spite of having raised cholesterol, I was always dead set against Statins. But I was in so much pain, I went for it. Within two days – and on a long weekend – I was having (equally) un-live-able-with side effects. It was Dr Google that provided evidence that reducing the dose to the minimum was shown to be equally effective. If not for being able to find – and decipher! – what Google brought me, I’d have gone to ER. Thanks Susannah, for (yet another amazing) convo you’ve sparked.
I am former pharmaceutical representative who has suffered with Rheumatoid Disease for nearly fifteen years. Many times due to comorbid conditions I have received prescriptions for drugs I knew to be dangerously contraindicated if taken together. I will never apologize for keeping a drug interaction checklist on Medscape. There is no universe where a complex patient can be effectively managed by an eight-minute appointment three times per year.
My almost 13 year old has a rare trisomy diagnosis that early on placed biases in his care depending on which doc you talked to. His affects c22 but some spoke of it like T21 or T18 when there’s literally no data to support similar outcomes. Things changed for myself and many families down the road when Google helped me find a small study that says the data doesn’t support a dire prognosis 100% of the time. Once I could put that info in the hands of some docs, the conversation shifted to looking at the patient in front of them.
Thank you, everyone, for the awesome comments so far. Tell your friends! We need all the evidence we can get and this can be a repository we build together.
Doug Lindsay wrote a beautiful post on his own site about how to react to the contempt expressed by the “don’t confuse your Google search” mugs, stickers, signs, etc. It’s too kind to me, which is why I hesitate to link to it, but the insights are too good not to share:
Dr. Google and Ms. Fox
Check out this closing thought:
To the meme “Don’t confuse your Google search with my medical degree” I answer with an old Chinese proverb: “The palest ink is better than the most capacious memory.” In other words, don’t confuse your recollection of a disease with a well written, credible, in-depth description found with google.
The mug meme simplifies the challenge of joint decision making. For the patient, they want recommendations from an expert physician but want to be educated more broadly before and after the meeting. One of the inputs for the patient/family may even be physician reviews but only a few health systems offer this. Here is one: https://my.clevelandclinic.org/staff/patient-survey
Did the physician explain things in a way that was easy to understand?
Did the physician listen carefully to you?
Did the physician give you easy to understand information about your health questions or concerns?
Did the physician seem to know important information about your medical history?
Did the physician show respect for what you had to say?
Thank you for writing this article, and opening the doors for all of the wonderful comments so far. In my own experience, Google has been phenomenally helpful for my own chronic disease understanding and management (though, admittedly, less helpful for one-off “rashes” and other items where I have an information gap, but not enough experience to sort through the noise– a problem that might contribute to a lot of the frustration on the physician side). When I was first diagnosed with an idiopathic condition, my neurologist said, bluntly, “There isn’t really anything else we can do. Maybe it will get better, but probably not, and there aren’t any other tests that will help us to know more.” This turned out to be false– there were several other conditions with overlapping symptoms but different courses of treatment– but it was a huge struggle to bring information in a way that providers would act upon it, and one that was insurmountable, at times, given the symptoms of my illness.
There’s a ton of quackery out there, which makes life worse for patients and physicians alike, but also so much wisdom in both patients’ lived experience and in the enormous realm of scientific research that no single person can possibly keep up on (and certainly no doctor could be expected to keep up on the thousands of different ones present in just their own panel of patients). Here is a place where technology can help tremendously.
We hear from individuals every day that have been told by their physician not to worry about their high “bad cholesterol” (LDL-C), that it is inherited, and there is nothing they can do. This is with individuals whose LDL-C is 4 times the normal limit because they have a genetic condition – familial hypercholesterolemia (FH) – that most physicians and the public are not aware of. A person with FH faces 10 times the risk of heart disease as someone with normal cholesterol.
After being turned away from the ER several times and having a heart attack at 38, Katherine Wilemon, the FH Foundation’s founder and individual with FH, set out to change this through research, advocacy and education.
We are thankful every day that someone Googles, finds our website, and gets a name for their condition – familial hypercholesterolemia. They can join a community to share information with other individuals with FH, and get armed with information to get the diagnosis and treatment they need. Most importantly, they will no longer be one of the 90% living with this condition who are undiagnosed.
Dr. Google is a life line for so many in the ultra rare community. My daughter has Timothy Syndrome. When she was born, there were only 20 world wide with her condition. Her life expectancy was 2.5 years. We were racing a clock with almost no doctor knowing what it even was.
Google found us a community of parents…Google made me wonder if a drug not previously tried may be beneficial. I was able to bring my Google research to her cardiologist who said we could try it. A lot of her non cardiac symptoms have disappeared. She is 5 now, and has not been hospitalized with blood sugar issues or infections, or respiratory issues in 2 years.
But Google is more than that. Through Google, you have access to papers, written, not just by the people who are studying Timothy Syndrome, but by those who are studying more common diseases that may help. And I have yet to meet a researcher who doesn’t email back when you read the paper and ask questions. That kind of open communication for the treatment or research into treatments did not exist before and would not exist without Dr. Google.
When my mom first heard of Hunter Syndrome (MPS II) from a TV show and told me, I googled. I watched every available video (few), read research articles, webmd, etc, listed matching symptoms, but also looked at many photos to identify the matching dysmorphic features in my son.
Then I took that list of 17 symptoms to my son’s pediatrician. At the end of his 2yo appt, I told her I thought he had Hunter Syndrome. She said, “What makes you say that?” Enter list of 17 symptoms from me and Dr. Google. She left the room and probably conferred with Dr. Google.
Sure enough, he had Hunter Syndrome. His symptoms were mild enough at the time that he probably would not have been diagnosed for 1-2 years. That’s 1-2 years without weekly enzyme replacement therapy which helped his body, but even more important, he would likely have missed the window to qualify for the clinical trial he enrolled in less than 2 years after diagnosis. Without that trial, instead of reading, swimming, running, making his own breakfast, picking out his own clothes and dressing himself, independently toileting, telling jokes, and saying, “I love you Mom,” he’d be at end of life.
So basically, my mom, the show Mystery Diagnosis, me and Dr. Google saved his life.
That experience made me passionate to (1) add more videos online for those uncertain or newly diagnosed families, (2) write online about symptoms I knew were associated with Hunter Syndrome but not in literature, (3) increase (smarter) awareness for earlier diagnosis, (4) fund research to give my son and boys like him a future, and (5) help design better clinical trials for Hunter Syndrome so they can accurately measure what these drugs are doing.
Thank you for pointing out that she probably googled it herself. I was treated at the Dallas VA & they were so poorly ranked that their doctors were *not allowed* to give medical opinions, they could ONLY use WebMD, by mandate of the OIG. They’d sit there and do it right in front of us. Patients used to laugh about it constantly. “Lol why do our doctors tell us not to use WebMD then use it right in front of us? Do they think we can’t read?” I confronted doctors about it & I always got condescending replies to the effect that without a medical degree, it would be “impossible” for me to understand what I was reading…
Sigh.
And they wonder why so many veterans choose VA hospitals as the location where we blow our brains out. As if it isn’t perfectly obvious.
Thank you again for all the amazing comments (and for making the jump from Twitter to write them).
Here are some quotes from other people, reacting to this provocation: When has Dr. Google been there for you?
Hanna Barton tweeted: “After having pain around my knee and seeing athletic trainers and even my ortho surgeon who didn’t have a diagnosis or treatment… I used YouTube to find a taping strategy that confirmed I had inflammation in my tib/fib joint and greatly reduced pain.”
Ranak Trivedi tweeted: “Right now. We just found out that our daughter has #celiac disease. Have been googling everything from blood reports to managing it to recipes. And, to your larger point, joined a FB gp right away bc those who live with it are the experts on mgmt.”
Busted Pancreas tweeted: “Too many times to count. Google has helped connect me with other people who have #T1D and other management approaches that my endo knew nothing about. Google has helped me become more knowledgeable about the mechanics of #T1D, the treatment options available to me, and what I need to look out for in terms of other autoimmune conditions. And google helped me have a successful pregnancy with #T1D, connecting me to all sorts of research and info that even the best specialists weren’t aware of. I was able to make informed decisions.”
Serenity Della Porta tweeted: “Once after telling my dr. I had googled my sx and believed I knew what it was, he asked what I though his reaction would be. I said I thought he’d say not to do that. Instead he said, “No. I think you’re right. And any dr. who says that to you is insecure.” It. Was. Awesome.”
Richard J. Scully tweeted: “This meme is Very out of touch as we continue the disintermediation and consumerization of healthcare.
“Please don’t confuse your horseless carriage with my BUGGY WHIP!”
Casey Quinlan tweeted a link to her own blog post related to the democratization of knowledge, which includes these words: “Co-creation of anything – from dinner to a decision about cancer treatment – requires all involved to be present, and equal, in the task at hand. That’s a particular problem for underserved or disadvantaged patient communities, and in the factory model that healthcare has become for much of the clinical side, of healthcare delivery.
So what’s a patient, or a doctor, to do? The most powerful force in healthcare system transformation is yet to be fully unleashed, but the shared decision making approach so thoroughly explored in this book could cry havoc, and unleash the dogs of full partnership. Because if people, and the medical professionals who care for them, actually form an ongoing partnership, “system transformation” will happen without the need for yet another million dollar blue ribbon panel convened in service of answering that thorny “what do patients want?” question.
Technology holds much promise for enabling and accelerating this partnership, but it also presents hazards moral and practical. How can we help someone understand their medical condition if they can’t read? How do we make informed choice a reality, and not just a radio button on an iPad screen? How can we ensure that the technology systems deployed to help us manage care don’t become our robot overlords? I see shared decision making – both science of and practice of – as the clinical pathway to resolving those questions, and to unlocking humanity’s full potential.”
More comments (and if someone I quote is reading this, please elaborate – would love to hear more about each one of these):
Alison Dvaladze tweeted: “Dr Google also a key source of info globally for patients with stigmatized conditions and in societies where providers don’t have time, or don’t believe patients need/want/understand health information. The big challenge for many patients is sorting fact from fiction.”
Donny Gerke tweeted: “When my sonographer refused to believe there were two types of biceps tendons (proximal and distal) and wouldn’t ultrasound my distal tendon rupture.”
Liz Salmi tweeted: “”Who thinks they know more about brain cancer than Liz Salmi?” – @MichaelDFratkin, MD
Dr. Fratkin posed this question to a room full of palliative care clinicians. Not a single person raised their hands.
This is how clinicians can model a response to the Google jokes.”
Chris Gibbons, MD, wrote on LinkedIn: “Perhaps the opposite question should also be asked. Has anyone heard of traditionally credentialed healthcare providers giving poor advice, harming patients or doing the wrong thing? We should not be biased but balanced”
Sandy S tweeted: “When Dr. Google helped me identify that my weird symptoms might be a retinal tear and I persisted in finding immediate care despite receptionists at practitioners’ offices telling me that the soonest appointment was 2 weeks away. And yes, it was actually a retinal tear.”
Jordan Davidson tweeted: “We started a new initiative @TheMightySite based on the idea that searching for health information increase health literacy & help people. I live with several illnesses & have dx’d most of them myself. The big exception was what led to this project: The Mighty’s Condition Guides
Since this blog is my outboard memory I want to capture a few more insights that flickered by on Twitter this past week.
Victor Montori, MD, tweeted: “As a clinician Ive noticed that, sometimes, the organized + prepared patient annoys me + trainees. I think it’s cause being prepared is powerful way of setting agenda + inadvertently derail the industrial agendas that we force on people w chronic conditions. #WhyWeRevolt”
Sara Riggare responded: “Very well put @vmontori : being prepared gives us patients a chance to set the agenda for the meeting”
And I should note that it was a tweet by Sara that pushed me over the edge to write this post (after months – years! – of seeing similar provocations). And it is a conversation that Sara was part of this week that prompts me to add an important caveat: For those who are living with anxiety, Dr. Google may NOT be a good resource.
Johanna Svenningsson tweeted in reply to Sara (who is Swedish, too): “Som jag tolkar det är det vi som lider av hälsoångest som inte ska googla. Jag har själv lidit av detta och vet att det denna typ av ångestsyndrom blir drastiskt värre av att googla. Om man inte lider av hälsoångest har googlandet ett annat syfte, tänker jag.” And later, in English: “Googling my symptoms made me crying and shaking. I was so afraid every time I ”realized” that I was suffering from a serious disease. I could google psychiatric symptoms without catastrophizing, but not physical ’cause they could possibly lead to death.”
And Sara wrote: “I just did a quick pubmed search and found articles suggesting that 3-6% of a population fulfilling the criteria for “health anxiety” (hypochondria) and that studies have shown that that group may suffer increased levels of anxiety from googling their symptoms.” Then: “Thank you @Johannas_tankar for sharing your experiences. I agree that ppl who suffer from health anxiety should probably avoid googling but for the 94-97% of us who don’t, Dr Google is often a very important and helpful source of quality knowledge”
Anxiety is a real danger for some people and I want to be sure we’re not dismissing that as we advocate for people to gain access to the information they need to solve problems.
> Anxiety is a real danger for some people and I want to be sure
> we’re not dismissing that as we advocate for people to
> gain access to the information they need to solve problems.
Once again this puts a spotlight on the eternal nature of this question, all the way back to the story of Adam and Eve: “Are we better off not knowing??” “Are we better off letting the more learned people investigate things, and shield us?”
Note that I’m not arguing with what Susannah said – I said it’s an eternal question. As recently as the 1960s and 70s it showed up in medicine in everyone’s fear of mentioning “the C word” or “the big C” instead of “cancer.” Jerome Groopman’s wonderful book “Anatomy of Hope” tells of how he was taught back then that it was his RESPONSIBILITY to shoulder the burden of that terrible knowledge, rather than ruining whatever time the patient had left.
This is the most perfect example of paternalism I’ve seen – a kind heart attempting to relieve the suffering of someone who couldn’t possibly do anything … precisely as a kind-hearted person in a certain mindset might do with a very young child. Somehow the image that comes to mind is a parent who knows their plane is crashing, not trying to explain it but just holding the child tight while the inevitable unfolds.
Of course today we can look at that image and ask how many assumptions in that paternalism are universally valid, and how young a child would have to be for that level of “you wouldn’t understand” to be true.
What I want many medicos to understand – including the kindest hearts – is that some of us very much want to know, and may even be able to help, as the anecdotes in this thread show. And yes, it becomes an additional skill for you to develop – another important form of shared decision making, patient-centered care, patient autonomy.
I think psychiatrists are deliberately exaggerating the possibility of Google-induced hypochondria/anxiety in an effort to protect the medical profession from informed patients. Yes *some* people have tendencies toward self-induced anxiety, but please understand that the psychiatric propaganda of “Google- induced anxiety syndrome” is often frankly just the “Don’t confuse your two minutes of Googling with my medical degree” translated into clinical language in a pathetic effort to give it credibility. Do noylt underestimate how far doctors will go to protect themselves from any percieved threat to the false-holiness of their profession. The God-complex is something they went to school for a long time to justify& they will gladly throw patients under the bus in their effort to maintain their godlike status. How many of those of us on this very site have been falsely labled “hysterical hypochondriacs” at some point by doctors who were willing screw us with a false mental health diagnosis rather than do the work of listening to us long enough to make a correct diagnosis and actually help? Do you have any idea what a hindrance to future medical care a false mental health diagnosis is? It is intended to make the patient afraid to seek further medical care, and to make sure that future doctors who see that notation in their records will not take them seriously. Psychiatrists claims that Google will make us mentally ill is just an extension of that same tactic. Just my opinion. I have seen shocking behavior from doctors trying to protect their profession at the expense of the patient. Sure, there ate some patients who are stupid that for them, “a little knowledge is a dangerous thing, but we’re not all nearly as stupid as doctors are implying. They are just desperate to protect their gravy-train of getting paid regardless of whether or not they actually provide medical care, and willing to throw patients under the bus to do it.
Sorry if any typos, my phone is misbehaving.
*are some patients who are so stupid that for them “a little knowledge is a dangerous thing”
My chronic disease (polymyalgia rheumatica) is well managed by my doctor – in part because I have loads of information from the internet, both medical info sites and moderated forums, regarding dosage of my medicine (prednisone) and management of side effects without additional medications. Google has helped me be a partner in my care; I’m better off and my open-minded doctor is better informed through me!
Thanks for sharing your story, Jean!
I was in treatment for breast cancer when I had a hysterectomy. Since I was now post-menopausal (via surgery), my oncologist switched me from Tamoxifen to Femara as a long-term oral chemo treatment, which is the protocol for post-menopausal women.
The arthritis-like symptoms hit me hard and fast. By the first followup appointment, I had already taken four cortisone injections in my fingers and had to have surgery on a thumb joint. My doctor would only say that the drug didn’t “cause” arthritis (duh). As a health care writer, I accessed studies, but it took googling chat rooms to find out how common these symptoms are with Femara. Studies referred to the symptoms only marginally, so my doctor didn’t want to take me off it. She kept saying the Femara was “twice” as effective for patients like me than Tamoxifen. I finally asked her to show me the exact numbers, and it was the difference between a 2% chance of recurrence and a 4% chance. After she point-blank told me she (a) would not report my experience to the manufacturer and (b) didn’t believe in shared decision making, I walked out of there with a Tamoxifen script and found a new oncologist.
> As a health care writer, I accessed studies,
> but it took googling chat rooms to find out
> how common these symptoms are with Femara.
> Studies referred to the symptoms only marginally…
Sandy, something in how you worded this spotlights another aspect of the democratization not just of knowledge per se, but democratization of being heard and who decides what deserves to be heard. Our model for centuries is that the learned should observe and report their findings to us, the unlearned. But by golly, that’s the mechanism by which old beliefs refuse to die!
We’ve been using the learned as our surrogates to go find stuff. What if we turn out to be capable of drawing our own conclusions, once we learn the ropes? (Not everyone who steps into the ring starts out a wizard. Access does not equal savvy.)
And of course you evoke the @LoomesGill anecdote above – the doc who said “It’s not supposed to hurt. There’s nothing in the literature about it hurting.”
(I must point out the parallel, too, with the many stories where a patient tells a new doc “I have X” and the doc says “No you don’t – it’s not in the chart” or vice versa.)
Excellent insights, Dave. I believe there’s a maturation and critical mass aspect to building trust in patient-based sources. Consider the trust curve for Wikipedia from initial launch to today.
Sandy, Dave, thank you for these insights. If you haven’t yet read Dana Lewis’s latest post about being both a patient and a principal investigator, here it is: Patient in the cage. Her illustration captures part of what we are talking about here — that if researchers don’t listen to people’s lived experience, they will miss the signals they need to see the truth and solve problems.
For those who don’t have time to click through or who are sight-impaired, it depicts a patient inside a cage with researchers outside it, talking about the problem they want to study.
Researchers are saying: “Let’s figure out how to solve blah blah blah.” “OK, fellow researchers, what do we see is the answer to blah blah blah?” “Clearly ABC is the answer” “OK, ABC it is. Write the paper and so it will be!”
The patient (in the center of the drawing) is saying: “XYZ is what is key.” (But nobody is listening.)
One figure off to the side is saying: “I don’t think this is what patients mean by saying they want ‘patient-centered’ research.”
Separately, we see a future clinical conversation:
Patient: “I am experiencing blah blah blah.”
Doctor: “The answer is ABC”
Patient: “But I think the answer is XYZ”
Doctor: “Well, the research says ABC so ABC it is”
Patients everywhere: “…”
It’s a truly enormous (in the non-trivial sense) flaw in the model of what information and advice is reliable. And that in turn is built on the assumption that we ourselves don’t (and can’t) know what’s worth knowing.
Kinda getting tired of it … which is why I’ve always been interested in “What will it take to change it???” That’s why I’m so interested these days in paradigms, particularly our “paradigm of patient.”
Have you seen this?
https://participatorymedicine.org/
Also Google has a program called Singularity University (which frankly I find gimmicky) which has a section on Medical Advancements, attending is probably not realistic, they only serm to want millenial whiz-kids tk participate, but you can still read their press releases and such. Just, you know, Google it.
🙂
Because of the nested replies on this thread, I can’t reply to Jennifer directly but wanted to quickly say, Yes! We know about https://participatorymedicine.org. Dave and I are part of the Founder’s Circle for the Society.
So glad you’ve found that resource, Jennifer!
Hi Jennifer – Singularity University and its Exponential Medicine program are excellent (in my view) though very VERY pricey, as you suggest … for what it’s worth they’re not owned by Google. Singularity’s founder Ray Kurzweil currently has a job at Google, but Singularity and XMed existed long before. Some good background is in the Wikipedia article.
Patients should be as educated as they can in as many ways as possible. As for physicians claiming that they know more than google, that is hubris. But so is thinking that google knows much. Google has partnered with Mayo recently in medicine –something which has harmed rather than enhanced its credibility in my eyes. (We don’t need a credibility censor, we need medical media literacy.) If we look at all the fabric of medical research, the holes in that fabric, the bias in the studies funded, the bias in the publication of studies and the unwillingness generally to acknowledge what we don’t know and to rely on “expert opinion”, it is disheartening. That’s not to say don’t listen to the informed advise, but also don’t rely on an expertocracy that is rooted in a hierarchical power structure that places patients at the bottom. I think this is why more patients are becoming research PI’s to answer the questions that are “research disadvantaged”–the ones patient care about.
Thank you so much for this. Without making a comment a mile long, will simply summarize: I have been victimized by contemptuous sneering, biased doctors for my entire adult life, and my health problems were becoming so difficult that if they had not killed me by now, I’d have committed suicide due to the pain I was experiencing combined with the overwhelming hopelessness of being unable to find any doctor who would listen and order testing; all they ever did was sneer at me and call me stupid & crazy. My medical records are an endless litany of contempt & dismissal. I finally took 20 years of those medical records calling me “hopelessly insane” to SSDI and basically told them, “if I’m too crazy to know when I’m physically sick, then I guess I must surely also be too crazy to work, so PAY ME.” My medical records convinced them to approve me on the first try with no questions asked. Once I was ruled too mentally disabled to work, I was able to focus all of my time & attention on analyzing my symptoms & researching medical studies & info to correctly identify my condition & correctly treat it. Recovery is a long process but once I obtained the correct medications, improvement began overnight. It was an exceedingly simple & obvious problem, which my doctors would have been perfectly happy to let me whither and die from. I literally owe my life to Google & Amazon. People sneer & laugh anytime I try to explain it to them because “Yeah, right, there’s no way you did a better job of treating yourself than a doctor!”, but the fact is my doctors had been ignoring my symptoms for my entire adult life and never had any intention of testing me, much less *treating* me, at all.
Doctor Google literally saved my life when all the others wanted to let me die.
The data on medical bias and medical incompetence in this country is undeniable, yet people still worship doctors out of fear & desperation that one day they will need their mythical “lifesaving magic powers”. The truth is that the only “lifesaving power” that exists is INFORMATION, and Google has put the information in the hands of the person who cares most about saving the patients: OURSELVES. Google is an enormously powerful & positive medical tool. Doctors simply hate it because it exposes them for the greedy frauds they are.
Also, a huge reason doctors hate Google is that if Google programs it’s algotmrithms correctly, it has the power to eliminate bias in medicine. And the truth is, the power of inflicting bias against patients they dislike is half the fun of being a doctor. It is the ugly side of humanity that nobody likes to talk about, but the field attracts a high percentage of sociopaths, because it literally gives them power over the life & death of vulnerable people. I have experienced it firsthand as an autistic female (there is enormous published evidence of the biases doctors have against us) and also I have found several web-chats over the years where groups of medical professionals gleefully jeer about “screwing over” patients they dislike by maliciously misdiagnosing them & labeling them “drug seekers”, “hypochondriac” & worse. I know how controversial the topic of medical malice is by the crazed way people defend doctors every time I try to discuss it, so I don’t expect this comment to be approved by the mods, but I do hope the writer of this blog sees it and considers it, because the problem of medical malice is very real, it is simply never addressed publicly because it is so ugly and terrifying; it is much more palatable to simply pretend doctors are morally superior because our lives are in their hands.
Or more correctly, our lives WERE in their hands; but with Google, our lives are finally in our own hands. As someone mentioned above, it is merely hubris (if you can’t accept malice) that makes doctors fear informed patients.
https://www.google.com/amp/s/www.cnbc.com/amp/2020/01/02/googles-deepmind-ai-beats-doctors-in-breast-cancer-screening-trial.html
I assume you have already seen this, but I wantec to make sure it gets included on this page for people who arrive here later. There is some backlash about this trial and the algotmrithms aren’t perfect yet but like I said, igmf Google gets them right, they can eliminate the problem of bias in medicine. Ironically the biggest challenge in programming AI algos is to NOT include the inherent human errors that were present in the original data. A big challenge, but I will trust an AI data analysis with my healthcare over the biased “opinion” of a doctor who hates autistic women for being “unlikable”, any day.
I, FOR ONE, WELCOME MY NEW ROBOT-DOCTOR OVERLORDS; because they can’t possibly do a worse job than my human doctors already have.
🙂
Sorry for the typos, my android is badly in need of updates and it’s making my cursor move around when I try to type.
Yikes. I hope my new robot-doctors don’t also have whatever flaw is making my Droid go all random when I type lol.
Having worked in that organisation, it is constantly looking for ways to take out human error, and that’s what this is about, improving safety and better outcomes.