Patients Google their symptoms, doctors need to deal with it

Many doctors roll their eyes whenever patients bring in a stack of research they printed out, stemming from a Google search of their symptoms.

A piece by Zachary Meisel in TIME.com describes a familiar scenario:

The medical intern started her presentation with an eye roll. “The patient in Room 3 had some blood in the toilet bowl this morning and is here with a pile of Internet printouts listing all the crazy things she thinks she might have.”
The intern continued, “I think she has a hemorrhoid.”
“Another case of cyberchondria,” added the nurse behind me.

It’s time to stop debating whether patients should research their own symptoms. It’s happening already, and the medical profession would be better served to handle this new reality.

According to the Pew Internet and American Life Project, 61% of patients turn to the web to research health information. That number is from 2009, so presumably, it’s higher today. Health information online is akin to the Wild Wild West. Stories from questionable sites come up on Google as high, or higher, than information from reputable institutions.

For instance, I recently wrote that, when looking for CPR videos online, many of the videos that come up on YouTube were of questionable accuracy.

Dr. Meisel comes up with some sensible ideas of how doctors can help patients in this era of abundantly online health information:

… doctors can guide their patients to Internet sites that exclusively present current, peer-reviewed and evidence-based health information.

And, perhaps more importantly,

doctors and nurses are going to have to shed the presumption that the Internet makes patient care harder. The sanctimony that comes with the eye roll and the cyberchondriac label may be an extreme example, but it’s still a problem if doctors continue to walk into the exam room with the belief that patients always need to be disabused of the wrong and sensationalistic information they picked up while trolling the Net.

Getting online and helping patients navigate through the trove of health information on the web is a new physician responsibility for the 21st century, like it or not. It’s what I try to do here on KevinMD.com, along with the links I post on Facebook and re-tweet on Twitter.

But doctors need to shed their disdain the Googling patient first, before more can get online to help them.

Kevin Pho is an internal medicine physician and on the Board of Contributors at USA Today. He is founder and editor of KevinMD.com, also on Facebook, Twitter, Google+, and LinkedIn.

Comments

http://secondbasedispatch.com Jackie Fox
Well said. The Google horse definitely left the barn. The only thing I would add is that we patients not automatically take Google’s word over that of our doctors or assume we have acquired the equivalent of a medical degree because we did a couple of hours worth of research. I’m like a lot of people, I got online practically the instant I was diagnosed with breast cancer and if I’m diagnosed with something else I’ll do it again. I think that helped make me a better patient. I don’t think my doctor disagrees.
pcp
No problems with patients doing their own web searches. But, if they present to me with a stack of print-outs or lists of web sites to review, they have a choice. Either I can 1. do a thorough history, exam, and treatment plan, or 2. spend the visit reviewing the articles. No way to do both during the same visit.
http://myheartsisters.org Carolyn Thomas
Excellent points, Dr. Kevin.
Dr. Stuart Foxman of the College of Physicians and Surgeons of Ontario cites one study that found many physicians rate the know-it-all “medical Googler” as somewhere between “frustrating” and “irritating”. Some doctors believed that online information causes the patient unnecessary confusion and distress. And the doctors surveyed in this study expressed other concerns, too:
“The highly curious and informed patients were sometimes perceived as ‘challenging’ with a tendency to test the knowledge of physicians. Some doctors felt that these patients were overly assertive, undermined their authority, and did not show sufficient trust in their health care provider.” Yet a reported two-thirds of patients apparently want their doctors to recommend reliable website resources for them.
Dr. Scott Haig‘s Time magazine essay called ‘When The Patient Is A Googler’ was a scathingly arrogant attack, describing his Googling patients as “suspicious and distrustful, their pressured sentences bursting with misused, mispronounced words and half-baked ideas.”
(I’d guess that Haig’s just a wee bit sensitive about having his “authority undermined”, wouldn’t you?) More on this at: “What Doctors Really Think of Medical Googlers” – http://myheartsisters.org/2009/08/19/med-google/
I now wish that the ER doc who sent me home in mid-heart attack with an acid reflux misdiagnosis had instead tried Googling my symptoms (crushing chest pain, nausea, sweating and pain radiating down my left arm). I’m now fairly confident that Google would have steered him to the correct diagnosis of myocardial infarction.

B. Kaus
My grandpa had the same thing occur and was dead a week later. I think physicians should ALWAYS take someone complaining of chest pains seriously and get an EKG. There are instances, though, where people are mislead by the internet to think their headache is a brain tumor or an aneurism or even MS! I’ve never met anyone who didn’t get headaches at least occasionally, so I can see how these websites may be creating a lot of unwarranted patient fear.

http://www.twitter.com/alicearobertson Alice
I’ve never met anyone who didn’t get headaches at least occasionally, so I can see how these websites may be creating a lot of unwarranted patient fear. [end quote]
This is true, but when our little son started taking headaches the doctor did nothing (oddly, he kept prescribing antibiotic). Then horrific nose bleeds….still doctor wasn’t concerned. I switched to an ENT who immediately noticed something with the cranial lines and asked about paralysis, but again diagnosed an ear infection. We switched to a neurologist (this was in the days you needed approval to go to a specialist and we couldn’t get approval. Caught in a limbo dance of knowing if we proceeded on our own the whole bill was ours…so I battled and got approval) and an MRI showed the brain tumor… an astrocytoma.
I realize sometimes these tests are a one-in-a-million deal….but for us it took some searching for a doctor who didn’t want to leave something unchecked.

B. Kaus
I agree – I myself had a cholesterol granuloma that was causing some issues including ultimately causing an infection in the petrous apex, and I had trouble getting diagnosed. There are some symptoms that are very troublesome (in my case, a mixture of headache, vertigo, numbness in one of my arms, and lastly, a high fever when the infection started) that should make one concerned. In my case, an ENT figuring out that the vertigo was coming from the brain instead of the inner ear got me an MRI.
One irony, though, is that I eventually discovered that my headache had nothing to do with the cyst, but was a simple a tension headache caused by some bad dentistry. It was the non-stop headache that lasted several months straight with no relief in between that really got my attention and had me looking for answers. It seems that the discovery of the granuloma was somewhat serendipitous in hindsight. Without the irrelevant headache, I would have assumed the vertigo was an inner ear infection and numbness in my arm was a pinched nerve (both much more likely than what I really had).

Louise S
Some doctors just assume that patients are just going by what they read online with no stacks of papers – rather than simply asking something like “why do you think that way?”. [I had a doctor do that to me.]
http://womenshealthnews.wordpress.com RachelW
Nice piece. “Getting online and helping patients navigate through the trove of health information on the web is a new physician responsibility for the 21st century, like it or not.” – And you know who can help physicians with that? Medical librarians. Seriously. It’s explicitly our professional responsibility to help people – doctors, nurses, patients, everybody – learn how to find and select the best quality health information, online or otherwise. I would like to encourage all clinicians to seek out their local medical library resources, and to support funding for medical libraries in hospitals, clinicis and medical centers.
http://Www.davisliumd.blogspot.com Davis Liu MD
Right on as usual. While many of us trained before Google, the question is how are the next generation of doctors taught to engage this new reality?
http://thederangedhousewifeonline.blogspot.com/ The Deranged Housewife
Mostly my experience with doctors lately has been in maternity care, so I’m speaking from that perspective when I say that a lot of research I’ve done online has been fruitful and way more info than my physician was willing to offer up. For instance, if my OB says “VBACs are too dangerous and always result in uterine rupture with death of mother and child – therefore I think you need a repeat cesarean,” yet I find information online that contradicts ALL of that, should I just disregard it? Sometimes I think it’s the physician’s worst nightmare that their patient will actually read up online because now it means they’re more informed and can make a more conscious decision about their care.
There is a lot of good information out there, and a lot of bad stuff. The patient needs to learn to discern which is valuable and which isn’t – but the doctor should be respectful at all times because, after all, that patient is keeping him in business. A lot of the same studies and information that doctors access, a patient can as well. And when I hear about the intern who rolls their eyes about a patient’s concerns, I’m reminded of the saying, “Doctors make the worst patients.”
WYOmom
My experience with online research got my son diagnosed correctly.
I took him in because at 4 he had suddenly started wetting the bed at night. He also had started that morning to complain of his chest hurting when he was breathing. He had only ever been to the Dr. for well child visits, so it is not like I am a panicky mom over every sneeze. Unfortunately our regular Dr. was booked that morning and we had to see a Dr. that was new to the practice.
The Dr insisted that he had asthma and he just needed an inhaler. I kept insisting that he test his blood glucose because of what I had read online about type 1 diabetes. After sighing and rolling his eyes he reluctantly agreed to check his urine glucose because, as he said that was the only thing that was going to satisfy me even though it is rare.
Within the hour my son was in the ICU, he did have type 1 diabetes and he was in DKA. His glucose was over 500. needless to say I have not returned to see that Dr because I felt he was not respectful and discounted everything I had found just because it did come from the internet.
I do think that doctors do need to consider that the patient can get good information online.
Michelle
As a librarian and a patient with doctors, I have some serious issues with the attitude some doctors have about patients having information. Even if the doctor is completely on the mark medically and knows everything, the few minutes spent with a patient leave substantial opportunity to overlook important information about that patient and provide wrong or harmful information. Here are some examples:
Through Google, I’ve learned not to take the calcium supplements one doctor told me to take at the same time as the thyroid medication another doctor prescribed. Calcium interferes the absorption of synthroid. I’m glad for Google, and not so appreciative for the information that my doctors failed to provide. Without Google, my thyroid levels would not be stable and my health would not be as good as it is.
Through Google, I’ve learned that when after my doctor says that I can return to my normal activities after a minor procedure, I need to confirm if they really mean that I can go to the gym and lift weights in the hundreds of pounds that will cause extraordinary intra-abdominal pressure. They never really mean that, by the way, and I’ve been told that doing that could result in me bleeding to death. I’m glad for Google, and not so glad for doctors instructions that could be deadly. Without Google, I may have suffered serious complications from very minor procedures that might have even cause me to die.
Rather than trying to know everything, doctors could be grateful that patients can and do sometimes find good information that is very critical to their health. I’ve tried asking a doctors treating me for conditions about a new article in prominent medical journal on that condition and what’s clear to me is that doctors can’t and don’t keep up. If patients are coming in with poor information, it may be more worthwhile to partner with librarians in schools and public libraries to teach people how to do this rather than trying to do something else when you already can’t do what you’re supposed to do in the time you have.
DeAnna M., RN
If I hadn’t gone online and done my research, my peds Dr. would have yanked the tonsils out of my 6yo….she had chronic sore throat, spiking fevers and a reoccurring stomach ache for 8 weeks. Multiple trips to the DR office and 2 trips to urgent care all ended with the same answer “It’s a virus”. Throat cultures came back neg for strep and yet her tonsils were so swollen that she was having breathing and swallowing difficulties. After researching on the internet (and I’m able to discern between peer-reviewed information and hokey), I decided that my daughter did indeed have strep, strain C. Back to the DR and a cultured strep test confirmed. Whew! Now we had the answer! But imagine my surprise when the Peds doc said to just let it run it’s course – that he wasn’t sure what antibiotics would work! Enough was enough- we went to the herbalist and the Naturopath and within a week of following an herbal regimen, she was 80% better.
Additionally, when pregnant with my first and second child, I researched various medical procedures and policies. Imagine my surprise when my OB insisted on giving all patients routine episiotomies! I researched and presented her with a stack of peer-reviewed and empirically supported articles that said the practice was outdated and unnecessary. She still insisted on doing them – IN SPITE of the research! Needless to say, we switched….
I understand that the time constraints on our medical staff are increasingly burdensome and difficult to manage. I for one, would welcome a patient who is invested in their treatment and care and takes the time to be informed. I believe that many treatment mistakes are avoided this way and would appreciate the opportunity to review research that is probably laying in that stack of journals I haven’t gotten around to yet.
We’re a team here – it’s time that doctors started playing fair.
http://anisaschell.wordpress.com Anisa
I’m so tired of hearing about how patients need to take responsibility for their own health, and then when they do, doctors complain of undermined authority. Physicians are hired for their expertise, not authority. They are HIRED. Which means the patient is the one with authority. They have every right to take action (whether through research or other means) in their own health. Doctors, have the responsibility to listen to them and help them find answers.
I’ve often researched things before calling my doctor. When I go in, I discuss what I’ve read. sometimes I’m right on and sometimes I’m not, but my physician and I work in a partnership. If a patient comes to a doctor feeling they need a stack of print-outs to prove or defend their beliefs, that would be a signal to me that they need to hire a different doctor – one who will willing listen and participate in finding answers together.

pj
Ha ha! So many insightful replies from thoughtful patients , but Anisa’s made me LOL! Thanks for pointing out the bit of a catch 22 some pts find themselves in re- “patients need to take responsibility for their own health, and then when they do, doctors complain of undermined authority.” It is a shame that attitude occurs amongst physicians.
Of course, as a PCP who tries to gauge each patients’ level of “research readiness” ( interest in learning about their symptoms and diagnosis), and adjust my advice accordingly, I must present the other side. I’ve had folks who insist they know what they have and what treatment they need. They don’t take my advice, follow up w/no improvement and act like it’s my fault they didn’t improve. When I gently ask how they expected to get better when they refused to do what I advised, I’ve been told literally, “Well you’re the doctor! You tell me!”
Other times, a pt will ask about all the different explanantions, tests and treatments for their condition, and when I explain them in lay terms, they ask for more detail. I then give the more detailed expl. which requires medical terms, and the pt gets frustrated that I was using words that were too complex!
I’ll never forget the mom who was deathly afraid of her kid getting measles but didn’t want the MMR vaccine. I asked if it just so happens that she declined it due to a celebrity advising moms not to allow their kids to be vaccinated. She said, yes, “Jenna Jamison.” I asked what she did. When told she was an adult film star, I suggested that the mom not take parenting advice from porno actresses…Mom seemed to be a bit bothered by that!

ninguem
Well, Jenna Jamison is a particularly successful porn actress.

Michelle
AMEN!!!

http://Www.twitter.com/alicearobertson Alice
It would be Jenny McCarthy, not JJ.

pj
I thought I’d heard they both believe it, but does it matter how successful they are? Would you accept parenting advice from them?

http://Www.twitter.com/alicearobertson Alice
Jenny McCarthy wrote a book with a doctor.
I tend to take parenting advice from moms who have been there and done that. Jenny faced a sick child, studied, changed to a type of vegan diet….so I listen. I think the diet is quite good (actually, it is a mixture of vegan and some Jewish dietary laws).
I have been parenting six kids for a very long time…home schooled for 22 years and still have much to learn. Now about that other Jenny….doesn’t she have twins? I am sure she has some good tips too!:)

PICUDoc
I don’t think it bothers me that patients/parents are getting their info online. What bothers me is the sources. Often patients will equate an article from age of autism about vaccines with one from the cdc since they appear next to each other in the google search. There seems to be a public distrust of the “medical establishment” sources on line at .org or .gov sites vs. more visceral blogs and sensationalized articles in online mags.
Dr. J
I don’t see any problem with patients having information or directing part of their work-up when they believe that they have a certain condition. If the work-up is negative however, perhaps they should consider that they may not actually have the disease they were worried about and work with their doctor to figure out what is going on.
As an example I recently saw a patient who came to the emerg with pretty typical panic symptoms, she registered as having a pheochromocytoma. She had had multiple pheo work-ups, including while she was symptomatic and all were negative. Her opinion was that she had an intermittently active pheo, she had read up on it and was certain she had this. I asked her to consider the range of possible diagnoses as clearly her symptoms were troubling, and a very exhaustive search for pheo had been negative. She told me in no uncertain terms that she would be getting another (#4) complete pheo workup.
I personally see the debate about google as just a symptom of the degradation of the doctor patient relationship. There is little trust left in the relationship, particularly in primary care (where trust is most important) and I frequently meet patients who feel doctors are mainly obstacles rather than allies. Sometimes this is just frustrating for both parties, sometimes it is a serious obstacle in achieving a diagnosis and treating the real pathology.

smartin
“I personally see the debate about google as just a symptom of the degradation of the doctor patient relationship.”
I am not a doctor, but I think the issue is how a patient approaches their “research” with the particular doctor. For example, I was reading on vaccines and my daughter is born in the exact month that the information says if you are born before this month then your child needs another Prevnar. So, during my next well child visit I told her pediatrician what I had read and asked her if that affects my child. It turns out that her pediatrician was trying to find out even before I asked (my kids’s pediatrician is awesome) and I could be very wrong, but it doesn’t seem that researching and asking in that sort of way is trying to undermine the doctor’s knowledge, just curiosity.
On the other hand, I know all too well how fraught the internet is with absolutely horrible information. With my last pregnancy I had a semi-elective c-section. Due to my child’s potentially large size and complications with my previous delivery, my doctor thought that a c-section would be the best choice. He said to think about it and come to my next appointment with questions.
Of course, I went home and researched it on the internet. What I found was horribly biased against c-section with a laundry list of what sounded like dire consequences for choosing a c-section. Luckily I knew people I trusted who previously had c-sections, plus there was no “degradation” of my relationship with my doctor, so I felt comfortable coming to him with questions and that his answers were honest. But, trying to find unbiased information on c-section versus vaginal birth is just about impossible. C-section is almost always painted as unnecessary, fraught with danger, and due to the needs of the OB, whereas vaginal birth is an ideal that never causes complications for Mom or baby. My real life experience is vastly different and I am fortunate to have a great OB.

Dr. J
I’m not suggesting that Google causes a degradation of the doctor patient relationship; I’m suggesting that the bickering over information is because of the overall degradation of the relationship in a general sense. That is, many patients view themselves as being in a primarily antagonistic position towards their doctors.
I see many patients each day in the emergency room who make the baseline assumption, before I have ever met them, is that I am not going to take them seriously or do a proper job of caring for them. The internet printouts are often the point of conflict but they are not the cause.

ninguem
Most people with the Internet printouts are fine. Everybody knows that, even the eye-rollers.
The eye rolls are not over the person who brings in the Internet printout of chest pain maybe being a heart attack.
The eye rolls are over the person coming with the Internet printouts of Morgellon’s disease and similar.
Before the Internet, it was the same sort of person who came in with a five-page list of somatic complaints.
Before the Internet, it was various health gurus. Had one come in with a book written by a fairly well-known quack. She had the book covered with an expensive cover, bookmarked with a ribbon. She handled it the way a priest might handle the Bible.
Then you know you will have to spend an extraordinary amount of time disabusing them of their misinformation. And they actually do not want to be informed.
It’s not all, not most, not even some. It’s a very small number that you don’t forget.

http://Www.twitter.com/alicearobertson Alice
Before the Internet the doctor was King or Queen…now if they reach knight status in the patient’s eyes they are really winning the duel…well battle.

Michelle
I am apparently one of those annoying patients. I google my symptoms and those of my child. I don’t necessary automatically believe that google is right and my doctor wrong but I like the additional info and treatment options that too often my doctor doesn’t bother to inform me of or discuss (had this issue with several different doctors) I know doctors are just human, they are busy, they see lots of different people all with different issues, and they can make mistakes. They are not as invested in my health as I am. I live with my symptoms 24/7, they listen to them for 5 minutes then treat for the first thing that pops into their head. If it is not resolved in a few weeks the onto next thing that pops up.
I’m not trying to undermine my doctors authority, I believe they shouldn’t have the authority in the doctor /patient relationship. The patient should. I am paying my medical provider to provide me a service. I appreciate their, education, training, experience, and opinion but do not accept that doctors are the all-knowing, all healing gods too many of them believe that they are. I google and may ask about alternative options of my mechanic, and plumber to.
My doctor should not be aggravated that I ask questions or ask him to consider different scenarios, he should listen, ask me what makes me feel that I may have ‘such and such’ illness and then if he doesn’t agree that ‘such and such’ is the issue, explain to me why it’s not, tell me based on this symptom and your history here then “this” is more likely… if he is not sure then run the appropriate tests and find out. A doctor behaving in this manner would over time gain my trust and I may not feel the need to google so much because I may begin to believe that my doctor is paying attention to me as an individual and has my best health interests at heart.
PS. Have the doctors that are complaining and rolling their eyes (real professional and mature by the way, an action that just reassures me that you are worthy of un-questioning trust.) that this cybercondria is a monster of their own making…..Instead of receiving individual, personalize, evidence based care (that builds trust in your provider) now it’s one-size fits all, jump on the conveyor belt, defensive medicine…and patients are starting to try to defend ourselves….and yes it may be a poor poor weapon but if google is all we have then thats what we have to go with.
http://secondbasedispatch.com Jackie Fox
I usually don’t comment multiple times but this is a great discussion and I wanted to chime in again regarding sources. My family doc and I have talked about how there’s a lot of junk out there. I stuck with sites like Mayo Clinic and webmd when I was first diagnosed.
And here’s a great post from Jill of All Trades MD explaining how you can tell the difference when you’re researching a condition online.
http://jillofalltradesmd.blogspot.com/2011/01/5-tips-to-keep-in-mind-when-reading.html
ninguem
It’s all a matter of degree, like anything else in any other human interaction.
The Internet printouts of Morgellon’s disease. People coming in with that, usually there’s no talking sense with them.
The Internet printouts and book like Bible thing was Wilson’s syndrome. (Not to be confused with Wilson’s disease).
Again, no talking sense. And I tried to do it respectfully. But no listening to me. No listening to chief of endocrinology at Major-League University (clinical interest was thyroid disease). I went out of my way to arrange that consultation.
Professor’s advice was we don’t generally accept the theory, but had the advice “if you want to try treatment, to keep faith with the patient and not just reject patient, do it this way to be safe”. Actually tried to do controversial treatment in a way that might satisfy patient while being safe. Start low, follow patient, see what happens.
A month’s worth of thyroid medicine was consumed in a week. This was followed by a complaint about billing, my fee (midlevel office visit, $60 at the time) was outrageous since megadose thyroid was not given. Would you like fries with that?
This was followed by a complaint to the medical board, which took still more time to deal with, hire a lawyer, complaint quickly disposed of, as the board can sometimes display common sense. The obscenity-laced poison pen letter to me from patient, including obscenities on the outside of the envelope and on the $60 personal check itself, might have had something to do with it. I kept copies.
The person subsequently informed me that a caring doctor who listened had been found (a naturopath). Patient lived happily ever after, with large doses of natural-source thyroid.
Well……happy for a month. At which point, patient was in the hospital with a heart attack with what was, essentially, an iatrogenic thyroid storm.
No complaint was filed against the naturopath.
Michelle, would you call that an annoying patient?
Finn
It seems like the most effective way to deal with the fact that the majority of patients Google their symptoms would be to teach them how to distinguish between reliable and unreliable information sources. If they refuse to accept that NIH or the American Cancer Society is far less likely to steer them wrong than Suzanne Somers, they’re probably a lost cause anyway.

http://www.twitter.com/alicearobertson Alice
A lost cause? I value the doctor at Cleveland Clinic who is on the board of Prevention magazine. He thinks outside the box and doesn’t mind supplements. He is in a Chair position….and I think knowing what boards a doctor is on is important. I am losing the most wonderful doctor I have ever met. He came in and said he had, “Bad news”. When I try to find another doctor to replace him I am going to ask if they encourage email (not just accept it, but actually encourage it), and if other outside sources are valued…and I am going to look into their speaking fees, and board memberships. It’s much better to do this than to waste both of our time. I want a thinker…..someone who wants a cure more than their own way. Teachable, not contentious. Because with knowledge doubling every few years, there is no one who knows it all no matter how many acronyms are after their name. I think brilliant people know how to say, “I don’t know.” The words are modestly magical and meaningful.

Paige
When my doctor told me my due date was the 14th, I told him Webmd had my due date at the 12th. He decided to split the difference and laughed with me. He was not bothered that I did some research on my own.
weezy
I think it’s normal for “anybody” to go through a stress search on Google. I’m sure most people would do the same if their car broke down. I mean, this person is crapping out blood, she has every right to search for info and be worried. Also, I’m sure everyone knows the hectic, craziness of trying to schedule an appointment, which will depend on your coverage…etc. Doctors should be open minded and give professional suggestions instead of rolling their eyes at the patient. How sad. No wonder the world is what it is, people are arrogant and lack understanding of the situation. On top of that, why not give your patients your email and have them explain symptoms. After all, they are the doctor that gets paid hundreds of thousands of dollars and they SHOULD care for their patients since it’s their occupation to do so.
Keith
I’m a googler/wikipedia patient, and I’ve only made the correct diagnosis once (Gilberts Syndrome — an easy one, right?) The process has made me trust my doctors more than before.
Michelle
ninguem-
If the ‘Michelle’ you are asking is me…then based on your description provided, yes, I would call that an annoying patient maybe even crazy (not offering a dx though ). I think it would prob suck to have such patients but it causes me to wonder if by experiencing this 1 (or 2) ‘crazy’ patient do doc’s then project a poor attitude on all the other patients that come in with some Internet research? assuming that if they did some research and have some questions that you will have to go through all the same ‘crazyness’ again and then disregard any thing this new patient may have ?
I do research on line I read several different sites and I also go to forums and read the stories of people who have had similar symptoms/experiences but I do not assume that because I have 1 or 2 symptoms in common with cancer (or some rare never heard of disease) that I certainly have it or because my symptoms are similar to Jane’s who did have cancer then I must have cancer….I don’t (generally) dx myself. I don’t take my research to my doc and say “I HAVE CANCER see I have proof” Then disregard any thing he says or the lab results. I present my symptoms to him- he says it’s such and such if it makes sense than I go with it if not then I ask about “B” or “C” and then expect him to explain to me why it is not “B” or “C” or if he doesn’t know and they could be plausible options, then for him to test for it. If he is recommending surgery or a medicine that I have heard has horrible side effects then I ask what are my other options and why is what you want to do the best one. I listen to his advice and then go look up everything he tells me and decide to go with it or not.
My current ON-GOING issue is I still have severe pain since the birth of my child 14 months ago, along with incontinence. There IS something wrong, I don’t know what it is and apparently the 3 doctors I have seen don’t know either. First dr was not concerned at all said “it just happens” with a total dismissal attitude. I don’t find that an acceptable answer. 2 nd dr said lets do surgery but could not explain to me what the surgery would accomplish/treat…finally even admitted that the surgery may make the pain worse- not an acceptable answer to me. The dx of chronic pelvic pain and a life long rx for pain pills also is not acceptable. “Have a drink and some sex maybe it will help you” NOT ACCEPTABLE dx… So I am the annoying patient. I am researching/ brainstorming ideas/ treatment options and presenting them. I google and then go ask about a fistula, about nerve damage, I ask about trigger point injections that I read a dr in FL has been using with success for vaginal pain, I ask about pelvic floor rehab…. I present ideas and expect him to check them out and/or come up with some of his own. Now I know it’s not a fistula because I had a colonoscopy that came back clean, fine, next idea? Just this week he said ” I don’t know whats wrong so I don’t know what to do about it” Honesty, GREAT!!!! but I’m still in pain here, my life has been greatly affected so he needs to go do some research…google or otherwise and work with me to find a solution or I will keep annoying him (or maybe a few more dr’s) with MY Internet research.
Patients are googling for better or worse, dr’s have to learn to deal with it. Patients are less trusting of their dr’s (I know I am- because of my experiences with un-caring, in a hurry got a BIG ego dr’s) Dr’s need to learn how to gain that trust back and rolling their eyes “OH not again” because someone concerned about their own health comes in with some questions, I believe is not the best course of action.
http://www.organizedwisdom.com Julie Bohlen
Great post. I appreciate Dr Pho and Dr Meisel continuing to encourage doctors and other health experts to be active online. Definitely agree that “Getting online and helping patients navigate through the trove of health information on the web is a new physician responsibility for the 21st century, like it or not.” The Internet can be an extension of the physician’s office. The patients are already there, so either physicians guide the health info experience there or they don’t. Hopefully, many of us will continue to encourage our health experts to lead the online experience while sharing their quality expertise and wisdom.
With nearly 90% of online Americans using the Internet to find health info (Harris poll, July 2010) and 40% turning to social media in the process (Epsilon Study, March 2010), there is a need for health professionals to influence the quality of the health information available online and specifically via social media.
Julie Bohlen
VP Professional Services
OrganizedWisdom
http://Www.twitter.com/alicearobertson Alice
I loved when Dr. Jerome Groopman gave kudos to a quirky patient. She was different, inquisitive…they both learned something. That is a good relationship. They say interns and nurses often catch doctor error…why?….they have not reached the unapproachable level.
A doctor is an information bank…not really a healer. They tell us what can help heal us…we decide…we can bring information to the table. We meet each other where we are at…put the cards on the table and deal with the solution together. When a decision is made then the doctor proceeds…it should be a team effort. Then after a type of consultation the plan can be executed…always with a willingness to reevaluate because the human body is still a bit mysterious.
I would not stay with a Svengali type of doctor who is unwilling to discuss or value my input. This leads to arrogance and error.
pcp
Seems like, once again, the discussion comes down to: patients want more time with their docs, docs are pressured to spend less time with patients. Even the so-called “patient-centered” medical home is based on the assumption that the doc spends less time with each patient.
kitty
I wish there was as much information on the internet as there is now back in the 90s….
Patients are less trusting
I was very trusting to my doctors until I started going to my ObGyn complaining of breaks in periods to no avail. She’d ask “how are your periods”, I’d say “I had some big delays but they were regular before”, she’d ask “when was your last period, “two weeks ago”, “oh OK”. As the delays got to be 3-months long, she’d ask “did it happen before”, I’d say – yes I had a similar one not long ago, and she’d still ignore it. Now, she was wasting time trying to figure out if it was time for me to have a mammogram (hello? I wasn’t even close to 40 yet), but my actual symptoms were not important. Then I came in with “I am worried, it’s been almost 4 months without a period”, she ordered an ultrasound, a pregnancy test, but never bothered to test my hormones. It’s a simple blood test, for heaven sake, and quite accurate. She just gave me 5 days of Provera, and yes this time it did bring my period. The following year, she skipped on tests trusting me not to be pregnant, but again hasn’t thought of doing the hormone test. Then I switched ObGyn, the new one ordered ultrasound (talking about wasting insurance money), but nope, no blood test to test hormones. I even complained to him about hot flashes, and he assured me that I wasn’t in menopause. It’s only when Provera failed to bring on periods that he finally ordered Estradiol/FSH test which came as Estradiol – 20, FSH – 70. So now I am 51 and am getting off HRT all the time wondering if given my extra risks and all the years my body didn’t get enough estrogen it might make sense to stay on it a little longer.
Now, I really wish the goole was available then… Then, I’d come to the doctor and simply request to tested my hormones. At 34 I was still occasionally ovulating, so maybe I could’ve rushed and found some way to have a child with artificial insemination (I wanted to find a husband first). At the very least, I’d be on HRT starting from 34 and not 38, which would be better for my bones.
Since then I started googling everything. I don’t bring stacks of papers though, I simply look for confirmation. Most of the time I don’t even bring up what I read. Sometimes I may ask a question “I read at NIH website that…” I read in this-medical-center/journal paper that…
One time when googling came in useful is when I was cross-referencing my mother’s drugs. She was on coumadin and very often doctors forgot to mention that some new drug they prescribe could increase the effects. One time I told it to my mother and as a result she went to check INR much sooner than she was scheduled to. It was 8 when it was supposed to be kept between 2 and 3. Good thing I googled…
Oh, and using internet helped me save my cat’s life too and understand that the vet I had was clueless and wanted to cut into her ear bone “to find out”. It took me 5 minutes cross-referencing her symptoms on Cornell vet database to figure out what could be wrong with her; after which I found another vet who thought of the right diagnosis immediately after I brought up symptoms (which was exactly what I found out). He did do surgery, but they knew what they were doing and called in a specialist to do it. But without the internet I’d not have known I even needed another vet.

pj
Kitty, the best OB GYN’s I know saythat blood testing hormone levels is USELESS. I suspected as much when the first set I ever ordered for a patient w/irreg. menses, came back with a range/scale, all based on days since ovulation. There was no way to tell what was normal because the normal range depended on where the pt was in her cycle. Well, if the menses are irreg, how in the world will you ever know that?????
I get so weary of telling women over and over why the test won’t help. I’m only human…

steven
Long, long ago; doctors told me what treatment I needed. Now they ask if I want it. That’s the game changer.
ps at our first meeting, my neurosurgeon suggested a website for me. How cool is that?
http://warmsocks.wordpress.com/ WarmSocks
Google isn’t really the best resource for medical information. There’s too much chaff to sift through.
It might be helpful if doctors had a website for their practice and included links to reputable information sources.
http://www.littlepatientbigdoctor.com Haleh Rabizadeh Resnick
I couldn’t agree with you more, like I raise in Little Patient Big Doctor, patients need doctors to partner with us.
Kerry OConnell
I believe that googling the doctor’s diagnosis and treatment options has far more value that googling symptoms. I reccomend that patients make the trek to their local University’s teaching hospital library, check out an internet access card which allows them access to the really good professional websites. One of the happiest days of my life was when my Doc.’s PA called and asked If I could make a copy of my book of infection prevention research for my Doc.. Patient’s generally have a whole lot more time to do research than Doctors, a team effort can have benefits.
Reta Russell Houghton
I would have loved to have a doctor help me when I received my diagnosis of RSD/CRPS. I was told to google it by the surgeon that told me that is what he thought. I was seeing him for another reason and asked about healing and this pain I was having. My doctor would just say, HMMMMMMM and write down some notes whenever I asked him questions about the continuing pain. He never had an answer for me, until I asked him directly if this was RSD. Then, he shipped me off to Pain Management.
In fact, I have never had a doctor sit down with me and tell me anything about my disorder. I would have loved to have someone do this for me, to prepare me for the future. If it wasn’t for the internet and my forums, I would be a certified patient in a mental ward.
MeMyselfAndI
I have only one time taken a stack of papers to a doctor. (I’m not good at googling symptoms, now after I get a diagnosis from doc ..that’s a different story! even in this instance, I already had one son diagnosed w/the condition)
I was prepared for an argument with the pediatrician. I was 99.9% sure my son had OCD (younger brother had it) and was prepared to fight tooth and nail. Took a stack of papers into a doc who had been flooded that day and the nurse (knowing what we were there for) had given us a regular 10 min appt. But he decided to take the few minutes to begin the discussion and take the paper work to review.
When I told him what I thought he about knocked the wind out of me with
“I have no problem with prescribing xyz to him”
I studdered …telling him I thought I’d have to convince him. Turned out, he’d been trying to figure out a kind, non jarring way to tell me that he thought both my son’s had OCD …. that and the evidence of trichotillomania (bald face! no eyelashes, no eyebrows) were a tale tale give away.
6 months later he surprised me with a TS dx … (younger son had that dx as well)
http://www.caringwings.com Jose Engelmayer
I totally agree that using the internet for health information is a reality. It is a good idea that doctors guide their patients to reputable health websites. I believe it is a good thing that patients want to be learn about their condition because by challenging healthcare providers they prompt them to put more thought into analyzing the problem and finding the best treatment.
More than once, at the doctor’s office, I have brought up to the physician’s attention alternative potential causes to symptoms based on internet research, and upon further consideration, the physician in fact concluded such alternative made more sense than his original diagnosis.
I think that if healthcare providers become more open-minded and consider patient’s research objectively versus being annoyed, better treatments will be reached and all sides will be happier.
Sincerely,
Jose Engelmayer, PhD
jose@caringwings.com
http://www.caringwings.com
blog.caringwings.com

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