Patient-to-Patient Communication Can Be Dangerous
I get asked quite a bit for specific treatment recommendations. People will tell me a few medication details and then ask what to do, or someone will ask what my experience has been on a certain treatment.
My answer is always the same: only your doctor is qualified to talk to you about your treatment as they know your personal history and health. My experience is only one person’s and cannot be generalized to any other person.
And that is the right answer. But unfortunately, it’s one people don’t want to give (or get).
A clear example is seen on Patients Like Me, a web site designed for patient-to-patient communication.
Patients Like Me
The premise is simple: find people like you and find out what their treatment experience has been like. Or find out what the experiences of specific treatments have been in general.
For example, I can look up the medication Seroquel and find out who takes it, why they’re taking it, and what their side effects have been. There are pretty multi-colored charts and everything.
And there are so many things wrong with this, it’s unbelievable.
- Self-reported patient experiences are inherently unreliable.
- People who choose to join such a website are a particular kind of patient – for example, people with a severe mental illness are not coming to this site.
- Patients rarely understand exactly what is happening or why.
- Patients will miss reporting crucial details or report things that have nothing to do with the treatment.
- There is no medical oversight.
- There is nothing to stop unethical people from either making treatments seem very positive or negative (depending on their motivation).
- Pretty much all patient data is served up to anyone who wants to know, like drug companies. (They have a ridiculously loose “privacy” policy.)
- The population size is far too small to draw any conclusions.
- Pretty graphs give people the impression this data is accurate and reliable, which it isn’t.
- There is no such thing as a “patient like you,” especially in mental illness.
And that’s just off the top of my head.
Patients Want to Be Part of a Community
Everyone wants to feel like they’re part of a community with others “like them.” They want to feel accepted. They want to feel safe. That’s why support groups can be so helpful for people. No one has to struggle alone.
And people want to believe information from someone in their peer group is reliable and relevant. They want to believe it more than they want to believe a doctor because the patient has a better relationship with those in their peer group, even if they don’t truly know to whom they are talking. And people want the easy answers.
This is normal, social, human stuff we’re talking about. No one wants to feel alone. And many people are trying to help others by providing what they perceive to be accurate information, however misguided.
Patient-Provided Medical Data is Dangerous
But I’m going to cut to the chase: medical data without reference or medical oversight is dangerous. Period. No one should make medical decisions based on anything other than what they’ve discussed with their health care provider.
Patients frequently give advice saying to take, or not to take, a specific drug. They indicate dosages. They present themselves as some sort of authority just because they (one person) have taken the drug. This is ridiculous. This is dangerous. This is irresponsible.
But Wait, Don’t You Talk About Treatment?
Yup. All the time. But I never give situation-specific advice nor do I advise people on treatment specifics. To do so could be potentially fatal. I always advise people talk to their doctor.
If You Want to Take Part
If you really want to tell the world the specific details of your treatment, feel free, but know people may use that information irresponsibly and advertisers may use it to target you (generically).
If you want to read the information from other patients feel free, but know you can never trust a random person whose identity you don’t even know. And remember, just because a piece of software put a number beside something, that doesn’t make it accurate.
Tracy, N. (2011, April 28). Patient-to-Patient Communication Can Be Dangerous, HealthyPlace. Retrieved on 2020, March 31 from https://www.healthyplace.com/blogs/breakingbipolar/2011/04/patient-to-patient-communication-can-be-dangerous
Author: Natasha Tracy
Thanks for this valuable insight, Natasha. There are great places for peer support, I believe one of the best is the DBSA (Depressive and BiPolar Support Alliance) which has groups all over the country. Great face to face interaction. It is important to me to know to whom I speak. While there may be some information exchanged online, true peer groups have people who attend training before running these groups, just to avoid the kind of misinformation which can spread quickly on the internet. WWW.SNOPES.COM is quite busy trying to keep up with inaccurate information.
We are all so unique;what works for one person may make me worse.
In my opinion psychiatry is more an ART than a SCIENCE.
Meds are such a trial & error process;I had a bad reaction to one of the first bi-polar medications I was prescribed,(Lamictal) but that doesn't mean they are all bad,or that it won't work really well for someone else.
I really appreciate peer advice about personal coping tips:the non-medical little tricks we use that help us function.
I personally use yoga,art,dance,prayer,vitamins,aromatherapy,"pet-therapy",writing,exercise,meditation,etc to "self-medicate" and would
suggest these methods as a SUPPLEMENT to appropriate medical care,but obviously not as a substitute.
Yes, on my personal blog I have several disclaimers too (not because of false information but simply because it's an absolute mistake to take advice from someone over the internet. Period.).
"I also urge people to try any medication their psychiatrist recommends (unless they have taken it before with disastrous effects — then they should speak up at the outset) despite the horror stories they hear because not all of us experience the same side effects. I will point to people who are taking meds that I found awful and are getting good results."
I don't know about that one. I wouldn't say "take any medication" but I would say consider it. Yes, people do get results from all types of medications but the only way to figure out if it's a good choice for you is to discuss it with your doctor.
(For example, if your number one concern is sexual performance, the doctor might not know that and by discussing the concern with your doctor, they may be able to suggest something that doesn't have that side effect.)
"Good support means helping people understand the decision-making process and empowering people to be a part of it, not the sole executor. Good psychiatrists know to work with patients and respect their rights."
I agree, agree. There is only so much information any patient can know and at some point we have to trust doctors to do their job. The last time I looked, I couldn't cut into my own body for surgery no matter how many books I read.
Thank You for quotations of my comment to your article "Patient-to-patient communication can be dangerous". I am glad to understand my goodwill intentions. Go on with your fruitful and well-minded work in HealthyPlace.
- Dr FERATI
One of the rules I follow in my support group is to remind people that they should discuss their concerns about medication with their psychiatrist before making any moves. Patients often bear false information.
I also urge people to try any medication their psychiatrist recommends (unless they have taken it before with disastrous effects -- then they should speak up at the outset) despite the horror stories they hear because not all of us experience the same side effects. I will point to people who are taking meds that I found awful and are getting good results.
Good support means helping people understand the decision-making process and empowering people to be a part of it, not the sole executor. Good psychiatrists know to work with patients and respect their rights.
Ah, yes, I mentioned the Geodon and food consumption connection but I cited a study. I didn't just pull it out of a hat.
(I _could_ have pulled it out of a hat, but if I did, it would have been something like, "I found while taking Geodon it helped when I took it with large meals." Clearly stated as an opinion and an experience that varies from patient to patient.)
Yes, I read that and I know his heart is in the right place but that doesn't make it a good idea.
I don't plan on going back to school. I considered it a couple of years ago but I just don't have the time or the money to do that.
Hmm, I see what you mean--I hadn't noticed people getting that specific with advice to the extent of dosing when I looked at the site so guess the moderation isn't as strong as it should be. But at the same time, I'm sure you helped people when you mentioned the trick about eating geodon with food so it's tricky to know how to draw the line.
As for the research aspect, yah I think it is trickier since it's the internet but in that sense the whole site is kind of an experiment in itself and they are learning as they go. Science is more than just controlled experiments and I guess the founder, Jamie Heywood, after seeing his brother die of ALS wanted to speed the process up a bit. His philosophy is at: http://www.patientslikeme.com/about/openness
Have you thought about going back to grad school to do research yourself?
Hello Dr. Ferati,
"It is of worth to mention the data that the impression of mentally ill patient to their psychological difficulties are different and subjective as well. When to augment to this the fact that patient posses superficially knowledge on psychic disorders, then the issue become serious and in most cases dangerous for their health."
Yes, as well-noted in the cases of mania and psychosis.
"The comments often are contradictory with real psychiatric facts, that may damages therapeutic process. These inter patient communication serve only to share anxiety as associate symptoms of any mental entity."
Yes, that's one of the problems.
And I agree, sometimes there is just a fear-spreading type of environment (I didn't notice that on this particular site).
Well, you say they have oversight, but I saw things I would pull without even trying.
"Take no more than 200mg of Xdrug"
That is _terrible_ advice and it, and others like it, was all over the place. If you want to know standard dosing, you can ask your doctor or look at the prescribing information but _no_one_ should be saying that nonsense.
There may be concerns about privacy some places, but they _tell_ you they are giving away your data. There are no "concerns" there as they tell you up front. You signed away your rights in the user agreement. In that case, a company wouldn't need to screen scrape, just contact the site and get the original data.
"You are not the only motivated and knowledgeable patient out there!"
Not at all. But if someone truly is motivated and knowledgeable they know better than to provide the above kind of specific information. They _know_ to provide links for assertions. They _know_ opinions need to be clearly marked as such.
And even if the data were private for the purpose of "crowdsourcing" the data is pretty much invalid because there is no way to check the accuracy of the claims. That's the problem with the internet, I could be a 64-year-old bald Hungarian male and you'd never know it. And someone might say they're depressed but really have the diagnosis of bipolar. And so on, and so forth. People are complex. That's why science is done in controlled circumstances and that's why you need a human to validate a human's claims.
I find the information interesting, philosophically, but am concerned it is more harmful than helpful in its given format.
(I also have a whole rant about statistical significance and how there is no indication how severe a side effect can be. Sometimes a rash is just a rash. Sometimes a rash can kill you. And, of course, it's rare and there's no indication of this type of danger. That lack of information can kill someone.)
You bring up good points about _why_ people seek out peer advice, but I think it also has to do with what I've outlined above. You are absolutely right, people have trouble trusting psychiatrists, treatment is very different than they've likely had and communication is always an issue.
"well documented cases of where the psychiatric profession has prescribed medications without adequately testing their effects on specific patient populations"
Well, yes. If no medication is approved for an illness, should you give none? You can do that if you like, but every branch of medicine would break down. I'm not suggesting it's the best thing in the world but it's a calculated risk. If the patient feels this is an unacceptable risk, they are certainly free to take nothing. Up until recently, _no_ medication was approved for the treatment of bipolar depression and yet thousands and thousands of people suffer with this.
"You also failed to mention the positive benefits about talking with peers. "
Actually no, I didn't. I mentioned it in writing an in the audio. What you're describing is support, which I agree, and mentioned, can be very useful for people.
"I think the key issue is people need to develop critical thinking and communication skills so they can evaluate sources of information in order to make more informed decisions about their treatment plans and implement them effectively."
That's a really high bar. Honestly, it is. It's _extremely_ difficult to put information into context unless you spend hours researching (which, of course, I do). People read something and assume it's true. Smart people. Because people don't have the time or the inclination to seek an accurate source. When I talk about a treatment I try to provide links to research so people can check the information out themselves and not just take my word for it. But patients don't link to scientific source. Which is why patients are valuable for discussion and support, but not treatment advice.
(As an aside, I once tried to part on a discussion board where they _prevented_ me from linking to sources. It was ridiculous. So everyone just said whatever they wanted, begging for misinformation to spread like wildfire.)
That's an excellent point. We can't afford to blindly trust doctors because it's _our_ health.
"I am the kind of guy who will get a cast put on my leg if it is broken or dental work done if I have a cavity and I will choose pro’s to do the work. I will not choose my neighbour however competant and knowlegable he is about broken legs and cavities."
I agree, it's good to talk openly about these issues.
The issue is not that _no_ patient has reasonable information to share, the issue is that you never know if the person you're actually talking to is one of those people. You know _nothing_ about that person except what they _choose_ to share, which may be knowingly or unknowingly inaccurate.
AND, anyone who truly understands mental illness knows how irresponsible it is to make treatment recommendations online. Which means that anyone who does doesn't really understand mental illness.
I'm what you call a "subject matter expert" when it comes to mental illness, particularly certain types, and I can tell you this, when patients share their information with me it is _never_ complete. It's not their fault; they don't necessarily know where to place importance. But the data is unreliable and putting it into a graph likely makes it less reliable.
Of old it is known that in medicine there are ill men and no disease. In other word, this mean that every doctor should treat their patient individually, because the same morbid entity isn't identical to two patient. It is all the same in mental health service, in which medical branch exist notwithstanding distinction among psychiatric patients. So, your remarks, Ms Tracy, on mutual discourse of patient to their illness are exactly. It is of worth to mention the data that the impression of mentally ill patient to their psychological difficulties are different and subjective as well. When to augment to this the fact that patient posses superficially knowledge on psychic disorders, then the issue become serious and in most cases dangerous for their health. Moreover, in occasional discussion between patient isn't there any complete history of mental illness of whoever patient.The comments often are contradictory with real psychiatric facts, that may damages therapeutic process. These inter patient communication serve only to share anxiety as associate symptoms of any mental entity. Everything more from this is counteracting.
So I don't necessarily agree with PLM's take on medical privacy--they encourage people to share as much as possible but it's a different case with mental illness as you pointed out in your blog. They are open about potentially sharing data with pharma but they have strict review for research protocol. The scandal in November with some company scraping data called attention to issues with privacy. They do have very strict moderators who will prevent abuses as well as research team. Some communities are stronger than others--I think ALS was the condition that really drove the site initially which is why that group has had the numbers to do statistically meaningful studies. Doctors gain much of knowledge through experience with multiple patients so I guess this crowdsourcing is trying to simulate that in a more personal sense since doctors don't always know the everyday challenges of living with conditions. You are not the only motivated and knowledgeable patient out there!
I agree talking with peers about medications should be taken with a grain of salt and not considered definitive information. On the other hand if concerns are brought up with peers about a treatment, it doesn't hurt to raise them with your medical professionals.
I do think the problem is deeper than you've indicated here. One issue that wasn't addressed in your blog was why do people turn to peers for medical advice in the first place?
I think many people turn to peers for medical advice because they don't have confidence in the doctor. Psychiatrists in the U.S. over the years have reduced the amount of time they spend with their patients due to economic constraints. With such short appointment times, their patients can feel they don't really understand what's happening with them. It can be problematic trying to contact psychiatrists in between appointments to address concerns about side effects.
Coming up with an effective treatment plan can often involve a lot of trial and error. This can be in sharp contrast to other forms of medical treatment people have received in the past and contribute to a lack of trust in the psychiatrist as to their competency.
For many people, there's a concern about what motivates doctors to prescribe what they prescribe. This takes the form of concerns about undue influences the pharmaceutical industry is perceived to have over doctors.
There have been well documented cases of where the psychiatric profession has prescribed medications without adequately testing their effects on specific patient populations (e.g. SSRI drugs for people with bipolar disorder and teens).
Many patients feels their doctors don't listen to their concerns about side effects and minimize these concerns. This poor communication between doctors and their patients can lead to putting more trust in peers who do listen and are empathetic to their concerns.
I think there is a significant proportion of the population who see psychiatry and medication as a form of mind control rather than a valid medical practice and are therefore more likely to gravitate to peers who are dissatisfied with their psychiatric treatment.
You also failed to mention the positive benefits about talking with peers. Talking with people who are satisfied and dissatisfied with particular treatments can reinforce the idea that individuals respond differently to different medications. It can also reinforce the idea that coming up with effective treatment plans can be challenging and doesn't mean their psychiatrist is incompetent. Talking with peers can also open people up to the idea that medications can help and aren't simply a form of mind control. Talking with peers can also help individuals develop better ways of communicating with their mental health professionals too.
I think the key issue is people need to develop critical thinking and communication skills so they can evaluate sources of information in order to make more informed decisions about their treatment plans and implement them effectively. This will enable them to put peer feedback into an appropriate perspective.
I'm taking Adderall for ADD. My family doctor warned me about the bad effects it will have on my heart in the long term, as shown on the the drug documentation.
I asked my pdoc if Adderall can be bad for my heart, and he quickly said "Not at all".
So , yes , you cannot trust patient, but also it would be silly to blindly trust what a doctor says.
I agree with Jake. Mental Health professionals and physicians are priceless, they are irreplaceable and the right source for medical attention. Patients are great source for support, encouragement and understanding, and often great resources for new information that we can take to our doctors or therapists for added input.
I think support groups are a great idea and provide valuable forums for people to offer each other shoulders to lean on.I agree with you when you say it is a poor place to seek medical advice.
Casting stones or reading tea leaves is not going to put you on the path to wellness nor will antecdotes.
With that said that is my personal belief. I am the kind of guy who will get a cast put on my leg if it is broken or dental work done if I have a cavity and I will choose pro's to do the work. I will not choose my neighbour however competant and knowlegable he is about broken legs and cavities.
I think this post brings up several great discussion topics. There is a lot of value in bringing up these points, for example the risks of relying too heavily on patient information versus your physician. Safety and privacy of online information is noted here as well. I agree completely that working with your doctor regarding medication is vitally important. I am certainly not trained or educated in the capacity to advise anyone about their medications! I would never claim to be and I would only consider telling people what has worked for me acknowledging that they should talk with their doctor about what is right for them.
But... I do believe there is also great value in peer to peer support and communication. I ask you to consider that some of your statements may be overgeneralized, for example statements 1, 2, and 3 of your list. It's important to caution our peers, but I also think it is important to acknowledge the value of our peers and our own voices as patients as well.
Thanks for sharing your perspective and giving us the space to debate and consider all of these issues.
This is rediculous.Patient input provides valuable insight. Patient to patient communication allows exchange of insight. What you're saying is prejudiced.