Look, I found Mitch, a classmate of mine from medical school, when he started to follow me on Twitter. Only I don't tweet (or I don't "emit tweets?" Sometimes I squawk, does that count?). I sent an email and while we were catching up, I invited Mitch to be a guest blogger.
Pharmaceuticals in the Information Age
It’s become a standard for me, when prescribing psychiatric medication, to ask patients if they intend to look it up on the internet. I think the internet is often a terrible place to go hunting for information. Either you’ll find a company sponsored site with happy faces, bells and whistles, or you’ll find disgruntled groups of patients denouncing the evils of one pill or another. The “impartial information” sites are frequently as toxic, especially for anxious patients, who can read through a comprehensive list of side effects, with little reference to their frequency or importance. And who knows if the information you’re finding is up to date? If a patient is paying to see me, it would make sense to bring his or her worries (Will my hair fall out?), concerns (Will this make me gain weight?) and fears (My friend took this and had a terrible reaction!) to me, not to the Web. If patients do want to Google their Rx’s, I ask them to send me whatever information they find which disturbs them. At least I can try to address the questions the internet has raised.
Even worse are television commercials for medications, which are unavoidable. I find that I need to watch at least some network TV just to keep up with what patients are seeing. How confusing to see such pained sufferers become spontaneously functional and cheery, while listening to the diabolical audio undercurrent of debilitating side effects. I know the messages are powerful; I frequently meet a new patient who comes in specifically because they saw a commercial for Abilify or Pristiq or something else during their favorite show. At least these drug mini-dramas do patients the courtesy of asking them to “ask their doctors.” Every patient is different; what works for someone, or causes side effects for someone else, is often an unknown. I find commercials send the message that THIS medicine will fix everyone.
Mitchell Newmark, M.D. is a psychiatrist, living and working in Manhattan, who is both a psychotherapist and psychopharmacologist, with a subspecialty in addictions.
Fortunately, my psychiatrist doesn't take this attitude, or he wouldn't be my psychiatrist. He knows that I will research the drug he is suggesting, and he also knows that I'm intelligent enough to be able to evaluate what I'm reading. Ditto with any other doctors I see. I respect their knowledge and experience, and they respect my intelligence and that it's my body, or we don't work together.
I dunno. Rather than telling people not to believe anything they read on the internet before running it by you, you might want to actively refer them to sites that make sense. CrazyMeds is a really good site. http://www.crazymeds.us/
I always google a medication I will take. I want as much information as I can get from a variety of sources. Just taking the drug based on information from one doctor is not making an informed decision.
I've never freaked out over information I've found. In most cases if I've gotten to the point of googling I end up taking the drug. I just need to know what I'm getting into.
Not everyone gets hurt by obtaining more information.
I'd love to see a study about people looking up information vs not and their reactions. These anecdotal stories of 'oh no people can't handle it' feel like they've got some confirmation bias in them.
I understand advising caution and I understand that maybe the majority of patients will take information the wrong way or get scared or whatever. But I do find it rather insulting that this seems to be the assumption. (I don't mean just here, but I see this assumption elsewhere, too.)
Mental illness does not preclude intelligence. I'm smart, I understand bias, I can read the scientific literature and understand it. I can put things together when I see the happy-time commercials and websites by the manufacturer, the studies sponsored by the manufacturer, and the anecdotes from patients of horrible experiences on a drug. I know that, at this point, all the information and research available on a particular drug tells me nothing at all about how any individual patient will react; all that does is give me information by which I can make my best guess. From what I've seen in 8 years of mental health care, I do these thing a lot better than some of the professionals.
When I was on psych meds, none of the doctors prescribing them gave me any information about possible side effects that might occur. I could not understand why my legs were restless and hard to keep still, and why I kept biting my own tongue many times a day - hard! nor why was choking on my food when I tried to eat. I thought I was getting clumsy with chewing and swallowing and that maybe I wasn't getting enough exercise so my legs wanted to move. It was only later I read about side-effects. I am sure the doctors thought I had "no side effects" because I never put two and two together and was not warned what might happen, nor did they ask me about typical side effects to see if I had them. Off the meds for about 5 years now, my legs no longer are restless, I no longer bite my tongue hard, but still have not completely gotten over the choking and have to be very, very careful swallowing because I choke sometimes, even on my own saliva. Would this doctor have been any better than the doctors I had at the time? I doubt it. I wish I'd read the internet.
Wow. These were not the responses I expected, and I thank you all for your thoughtful comments. I try to be very thorough about giving my patients information on all the reasonable medication options and their side effects. I tailor my comments in accordance with the particular patient’s biological and psychological profiles, his or her medication history, as well as his or her viewpoint on medication in general. These are things the internet cannot do. I also practice what I preach—when I go to my internist, I trust him to give me all the options, tell me about which side effects are likely or dangerous for me, and trust him to ask his colleagues when he is in doubt. I have seen so much personal suffering from patients in my practice—people who have spent years unmedicated because of what they’ve read on the Web. I simply ask patients to review things they discover on the internet which disturb them. I have learned much about medication effects and options from articles brought to my attention by patients. But I have also watched anxious, overwrought, and sometimes paranoid patients do themselves a great disservice by reading unedited lists of terrible side effects or overly rosy predictions.
Mitchell, it sounds like you might be more of an exception in being so up front about side effects than many have experienced, and maybe you "shouldn't" assume that all your docs are so forthcoming, although perhaps with a fellow doc they will be, then again maybe they assume more knowledge and slack off some on that end, who knows . . .
Anyway, I've found that my psychiatrists have generally given minimal information about potential side effects, most of the time. One recent exception is agitation sometimes experienced with Geodon, and OH BOY did I have that, along with other crap. I'm no longer on that hated med, more for some scary unexpected bleeding than anything, but it wasn't until AFTER I'd been on Effexor XR awhile that I'd been told about the side effects of nasty nightmares and other stuff from it, that that was why I was having these things; it would have been really GOOD to know beforehand, you bleepin' doctors, thank you very much!
Sorry. I hate being told AFTER THE FACT. After the barn door has been closed and the horses have been let out, as it were.
I'm not on that med anymore either, because after a number of years it stopped being effective (and that idiot psychiatrist who was in the drug reps' pocket kept trying to push Pristiq down my throat, which is practically the same bloody thing, see, I can make sense of the commercials and science too, it just has one less byproduct).
Duh, if effexor quit working, Pristiq isn't going to bloody cut it, so quit trying to get your drug company kickbacks. Another reason I fired the guy. During this mess I actually heard a drug rep discussing a recent drug company event that the psychiatrist had been to, and 5 mins later he's trying to push Pristiq down my throat, lol. I'm not an idiot, heh.
Mitchell Newmark, M.D. on the limitations of the internet: “I tailor my comments in accordance with the particular patient’s biological and psychological profiles, his or her medication history, as well as his or her viewpoint on medication in general. These are things the internet cannot do.”
Um. crazymeds.us doesn’t know me personally and can’t make a specific recommendation. But the cool thing is... I do. Know me personally, that is. I know my “biological and psychological profiles, [my] medication history [and my] viewpoint on medication in general.” Some of these things I know much better than my psychiatrist does. CrazyMeds does an excellent job of laying out the facts, both objectively and subjectively.
For instance, taking psych meds because you’re crazy “sucks donkey dong.”
Also, not taking needed psych meds when you’re crazy, taking the wrong psych meds, or taking psych meds when you don’t need them are all much worse than sucking donkey dong.
Also, lamotrigine can give you a killer rash, so you should see a doctor right away if you get a rash while taking it, but it’s not going to kill you right away — you have time to get to a doctor — so The Fatal Rash is not a reason not to take lamotrigine.
Also, advice on how slowly to taper Trileptal.
Also, that while research is unclear, the anecdotal evidence is not: you get drunker when you drink while taking sertraline.
Also, that eating well and good sleep hygiene and exercise and yoga are essential for everyone with mental problems, but if you’ve got really bad mental problems they just aren’t going to be enough.
Also, that olanzapine is great to bring you back to reality when you’re wigged out but there are better meds for long-term maintenance.
It’s a big website. Do you really have time to go over all the different medications, explain why you’ve chosen that one, what the side effects are, why they might or might not be important, how this medication is the same or different from this other one, how this medication interacts with other medications and with alcohol and recreational drugs, what other things the same medication treats, what the cheaper and more expensive options are, how likely it is that this will be a long-term maintenance drug... I’m sure you discuss some of these things when you prescribe medication, but all of them? In detail? Every time? If someone needs to spend a couple of hours reading websites to absorb enough information and insight to satisfy them, do you really think that you can do better in a bi-monthly twenty-minute appointment?
Do you ask your patients to send you their printed reading material for approval too? Some psychiatrists actually provide suggested reading lists. Dinah did a post on books not long ago. There was no discussion that reading books by Kay Redfield Jamison or Andrew Solomon or Irving Yalom were harmful to patients. Dinah did not worry that her patients should be relying solely on her for information and insight about their condition and its treatments. Do you think it’s dangerous of Dinah’s patients to read? Do you think this blog is irresponsible, since it interferes with patients’ dependence on their prescribers?
Mitchell Newmark, M.D. on respect for the expertise and professionalism of the prescriber: “I also practice what I preach—when I go to my internist, I trust him to give me all the options, tell me about which side effects are likely or dangerous for me, and trust him to ask his colleagues when he is in doubt.”
That’s nice. You happen to be an MD, so you understand generally what processes your prescriber is going through when selecting medications to prescribe, and you have some understanding of your body and pharmacology. But if someone doesn’t have an MD, then I guess it demonstrates distrust of their doctor if they realize that they have to learn more about their body and the drugs they are taking. If you didn’t have an MD — say, you were an engineer or an english professor — and didn’t know much about the way bodies and drugs work, are you telling us that if someone prescribed you a medication that you would likely be taking long-term, that it wouldn’t occur to you to look it up? That you would have *no curiosity at all,* *no desire to learn more,* because you trust your doctor and that is always enough?
I’m not saying there aren’t crackpot websites out there. Of course there are. Lots of them. What I am saying is, you can offer to supply reading lists for those who want to go further. Patient education outside the office can and should be something beneficial to both you and your patients, so why not point interested people in the right direction?
Mitchell Newmark, M.D. on blog comments: “Wow. These were not the responses I expected.”
Just out of curiosity: how familiar are you with the internet? You posted something about how the internet is bad for patients on an internet blog frequented by patients, and you are surprised that you were challenged? What reaction did you expect?
If the reason you are afraid of the internet is that you don’t know it well, you might want to become more familiar with it — or at least learn from patients who are familiar with it and can point you to helpful sites.
There just is not time to go over every possible side effect. The standard is supposedly "most likely and most serious." The problems with drug info on the Web: misinformation, to much time to explain why it's misinformation and delay in treatment. One patient didn't pick up his prescription because of something of particular concern. (Why didn't he call me?) Then there's the pharmacist who misinforms the patient when they pick up the drug, or delay from preauthorization. Today a pharmacist demanded to know the patient's diagnosis before filling a scrip for venlafaxine! (I refused and called the state pharmacy board.) Sorry if I'm derailing again.
Some advice for malpractice defense lawyers: If the patient claims the doc didn't warn them about that deadly rash, subpoena the hard drives, and look for Web browser history to see if they read about it online. If you don't find that, look for evidence they expunged the browsing history.
Going back to Dinah's last post and comments: Of course the patient should decide whether to try the $400 med or the $4 one, but often neither one of us has a clue about the cost until the patient gets to the pharmacy. More delay. Oy. As Dinah might say.
and Dinah does say "oy" a fair amount these days....
I must say that I'm suspicious of anybody who has that attitude that information is a negative thing for a patient (or anyone, really) to have. Alright, there are idiots out there who will believe obviously biased sources, but that occurs on both sides. That bit about sources just fails for anybody who isn't an 8-year-old or an 80-year old who believes every chain letter they get is real. I look at study methodology, I look at wording, I check multiple sources, compare information, look at the differences between studies with different results. I'm probably more technically minded than most people, but are there really that many people who don't recognize that the internet contains a wide variety of sources of information, both good and bad? How can someone believe everything they read, if different sources contradict each other?
How much time do you assume that a doctor spends on one patient? This is certainly less of an issue with psychiatrists who do psychotherapy as well, but most psychiatrists simply don't have the time to be that thorough with every patient. How is my psychiatrist possibly going to be able to ponder my experiences and brain chemistry to the same extent that I can? I only have me to deal with!
Are you saying that if you had cancer, you'd go with the first treatment recommended by the first doctor you saw, without any research at all? You wouldn't look for more information, wouldn't investigate relevant factors, wouldn't find out about other people's experiences, catch up on the latest research or find out what the best treatment options are at the top research hospitals? You'd just assume that the first oncologist you spoke to must be right?
@Moviedoc--The problem with information from a doctor: misinformation. There are good doctors and there are bad doctors and there are doctors who get the majority of their information from drug reps. For that matter, there are doctors who outright lie. Whenever I haven't done my own research, the results have been disastrous.
That said, my psychiatrist prints out two copies of the lists of side effects for every medication that she prescribes: one to sign, and the other to keep and read. I'm generally not too interested in a list of side effects, however, because I'd like more information on the factors surrounding those results. I find simple lists to be of limited value.
And, as Alison has pointed out, crazymeds.us does an excellent job of sorting through piles of information, boatloads of study methodologies, and breaking down meanings of statistics, biases, and subtle details.
Dr. Newkirk, I am curious why you didn't expect the responses you received. I think that is a perfect example of the communication breakdowns that seem to be happening so much in medicine, not just with psychiatry.
You said, but I have also watched anxious, overwrought, and sometimes paranoid patients do themselves a great disservice by reading unedited lists of terrible side effects or overly rosy predictions.
I find it very insulting that you would label people like this. I am sure many patients on this board have had experience complaining what turned out to be a very legitimate side effects but we were deemed crazy because you can't trust those folks with mental health labels.
Movie doc, because manufacturers put warnings on medication labels, people can't sue if their doctor didn't warn them. That ship has sailed.
Besides, most people with psychiatric histories have a slim and none chance of being able to successfully sue even if the case was legitimate. The focus would be on the person's history which would not make them a credible witness. Of course, that is wrong but that is the way it is.
I think you know that and I am not sure why you are raising the malpractice issue.
Just so people know, I am not talking about my situation as I just speaking in general terms.
Somehow, I think Mitchell just wanted to try his hand at blogging, and somehow it seems that his entire character has come under attack!
Oddly enough, I read this post as simply that if his patients were going to Google a medicine he prescribed and they discovered something that concerned them, he simply wanted them to come to him with their concerns and discuss them. I didn't really see this as "Don't look at the internet because you're an idiot who will believe everything you read," but more as an invitation to a discussion.
Alison asked if THIS blog is harmful to readers. If our blog inspires a patient to turn to his time-rushed, med checking doctor, and say "wait, I have concerns" that seems like a good thing. Anyone who wants to tell their psychiatrist 'I read on Shrink Rap...' ....well, we'd be quite pleased!
I glanced at Crazymeds and I will have more to say on the subject....
Dr. Newmark, my apologies for misspelling your name. I also had a few other typos in the post.
As Diana says, oy,.
Dr. Newmark - I absolutely agree with you (and my shrink, also in Manhattan, takes the same approach). I am an intelligent, successful professional (or so I am told). I know the commercials are exactly that - commercials. And yes I know the internet can be a great source of complaints by unhappy patients. Nonetheless, I appreciate my shrink confirming that. I value his input and his experience in prescribing these medications - as far as I am concerned, all the internet research in the world won't make up for that. I too am surprised by the other comments. I think your approach makes perfect sense.
I certainly don't mean to participate in any character assassination. I do not know Dr. Newmark enough to make any judgment of his character. What I do know is what I read in his post and that I was insulted by it. Still, I do apologize for the rough introduction to blogging.
Perhaps Dr. Newmark really does have a more nuanced view on patients looking up drugs on the internet, but rereading his post, he does present a very simplistic view that it is a negative experience, that there is no good information out there, and that his patients are incapable of sorting the information without his help. If he was just focusing on the negative aspects of patients looking up drug info on the web, this all makes sense. But this wasn't introduced as a discussion only of negatives. The first sentence describes his standard of asking patients if they will use the web to look up drug info, then goes into all these negative aspects, without a nod to the patients who don't need such coddling. Introducing this discussion with such a universal statement, then discussing only negative aspects certainly makes it appear to many readers that this post represents his entire understanding of patients researching drugs. Posting this to a site where so many patient readers/commenters are savvy enough not to fit the category of patients he is talking about and implying (intentionally or not) describes all patients, was probably a bad idea. Perhaps the biggest problem here was misjudging the audience. Simply saying that he was describing the negative aspects of how web research will impact some patients would have gone a long way. Or saying that, yes, there are these negatives, but there are also a lot of patients who benefit by doing this research. Acknowledging the rest of patients, the group n which most patient commenters here fit in, would have gone a long way.
I also go to crazymeds for info. What are good sites to peruse for info on meds and side effects?
One more thing I want to add:
My generation (gen Y) will, before anything else, go to the internet to look for data/information. It's in our generational and socio-cultural makeup to search out information before making decisions.
In my own case, it's been recommended that I try a new med. My shrink can talk it up from today until tomorrow, but I won't commit until I'm confident with the decision to try it - and the confidence comes from reading, whether it be scientific studies, comments on blogs like this one, message boards for people on these meds, or articles within the mainstream media.
If patients do want to Google their Rx’s, I ask them to send me whatever information they find which disturbs them.
There's never going to be a perfect drug for a person - side effects are inevitable, and sometimes the information about side effects or drug efficacy or even Price! can be disturbing.
My shrink would never have time to see patients if this was his policy.
""I also go to crazymeds for info. What are good sites to peruse for info on meds and side effects?""
I like rxlist.com and drugs.com.
I print drug info for patients from MedlinePlus because it's official. All the psychiatric drugs are linked from Drugs
I had never heard of any of these websites for medicine info, so people, please don't assume all patients "know" the "good" sites to go to.
I've always been of the mind that to google medicine information would feed too much into my anxieties, and the only times I've done so have been when I've been trying to seek info on how much it would take to overdose on something, which you can't really find anyway. Those times I want to die.
I think the readership of Shrink Rap, at least the commenting readership, may be skewed towards a more level-headed, I can judge between this-and-that, kind of bunch, than he generally might have thought.
I do believe that he wasn't trying to be patronizing about it; not everyone knows about the "good" sites, myself included. I believe his approach is a reasonable one for many, with some of what I said in my previous response kept in mind as well.
I welcome him to the blogging arena, rough though the waters may have proven to be; some consumers are more educated than others; some are more fearful than others; many patients with anxiety disorders, like myself, have a hard time not letting their fears run away with them, although on the VERY rare occasion I've come across information on one of my meds online, it hasn't really alarmed me, it's been in the course of reading about something else mental health related that happens to mention something I'm on; sometimes that happens to be here, on Shrink Rap.
Although I did get that rash on Lamictal and freaked out big time, calling the doc on call that weekend to find out what I should do; I didn't know if it could wait since I'd been told it could lead to life-threatening stuff.
Doc on call told me to stop it until I could get hold of the psychiatrist Monday morning, which I did, and he confirmed the stop, and confirmed that he was glad I had called a doc over the weekend when I couldn't get a hold of him. I think I was caused perhaps more panic than necessary, if what someone says up above from crazymeds is true, but in this case caution is better than not, and it wasn't like I was waking a doctor up, it was late afternoon.
That was another exception where I HAD been told about a potential side effect ahead of time. Obviously I took the measures I had been told to, should the event occur, which it did.
Sarebear, No, I wouldn't expect that everyone knows all the good sites. I don't even expect that everyone can tell a crackpot site when they find one. That's why I was suggesting that Mitchell Newmark, M.D. take the initiative by referring his patients to good sites, rather than just wishing that people would make things easy for him by trusting him and not being interested in learning anything outside his office.
Wanting to learn more is a good thing.
Thanks, Dinah, for lending me a helping hand. And I do agree with Jessa, when she pointed out that i should have balanced the positives with the negatives. I hope that I did some of that with my first comment. I really have learned a lot from patients over the years, through their research.
It's true that any good doctor should use the "most common/most dangerous" rule as a guide when outlining side effects, but then should tailor it to the patient they are working with. And I don't really find it so time consuming. Some patients WANT 10 minute med-checks, but I am happy to see patients for 45 minutes if that's what's needed---because the patient has a lot of questions, or the case is complicated, or the patient just needs a lot of time to tell his or her story. I often don't prescribe meds on a first visit, because I don't think you can get to know anyone well enough in a single visit on a single day--unless the patient feels they are in an immediate crisis. So another question I ask at the start of a session, especially with a new patient, is "Do you think you need to walk out of here with a prescription today?"
Curiously, it seems that the comments imply that no doctor thinks about price. I am very aware of price, what's covered and what's not, generics, pre-authorizations, etc., and I know it is real and valid concern.
I was very sick this past winter, with a complex and unusual combination of medical problems. I did go to the internet, and found very little that helped me, but I did have many long discussions with many doctors. One day in the hospital, 4 different doctors wrote 4 conflicting orders in my chart as a result of those discussions. That's when I picked one doctor to be in charge, trusting her to consult the others before making decisions. Eventually, you have to trust some one, and since none of you, except Dinah, know me, I can understand your suspicions.
Far from discouraging me, I can say that my first blog posting ever has been an educational and ultimately positive experience. Perhaps I am starting to see more value in the Internet.
And you will be hearing from me again!
I've found sometimes that I had to look up stuff on lamictal and birth control on my own and realize that the sample studies were small.
My psychiatrist didn't know much about the interaction and whether it affected the efficacy of the pill, and the PCP and nurse practitioner didn't know how the pill could affect the lamictal. I think that something came up in the EMR.
I brought the two studies I had read on pubmed, summarized them and we made a decision. Later I decided to get a copper IUD, but I think I would have had to go see a specialist in women's psychiatry and reproductive health.
These weren't stupid doctors at low-ranked hospitals either. Just busy people.
Off topic, but I want to say kudos to the shrinks for periodically hosting guest bloggers and other times quoting articles and linking back to the original site. I have just had my intellectual property lifted and posted on someone's blog, word for word, no less. It is nice to see attribution given where it is due.
I work in community mental health as a therapist. The internet has created a brand new set of problems somewhat related to "medical students disease."
People read about the potential side effects or bad stories of others and it becomes a self-fulfilling prophecy.
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