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teller80 Sun Oct 23, 2011 03:37 PM

My doctor reads my posts (and puts them in my file)
Hi. I am posting under a new username, I've been on these boards for awhile.

I know nothing is private on the internet. My "real" username is very close to my real name, I talk about things in my posts that would make it pretty easy for my care team to recognize me, I may of even mentioned my doctors by name. I know all about not expecting privacy online, so I've always kept my posts kind of generic. I'm not ashamed of anything I've ever posted.

This summer I was in for a transfusion. My chart was in the room, and I was curious about the last BMB I had, so I looked in it. Imagine my surprise when under a tab labeled, "correspondence", was a copy of one of my posts on this board!

I found the incident to be... I don't know... stalkerish. Which is why I'm using a different username. Also, to put this in my file assumes they are confirming it's me. Yes, my username is close to my name, but not a guarantee.

I was just wondering you all's opinion of this. Did you realize your healthcare provider read this board? Should I ask them about it? What should I say? The evil twin side of me thought of posting something along the lines of, "I'm REALLY attracted to my doctor what should I do?" and see what the next visit was like. heehee. But, I didn't.

cheri Sun Oct 23, 2011 05:47 PM

Personally, I think all health care providers dealing with MDS shoud read this forum and recommend to patients because it is such a wonderful resource and source of support. This site has really helped me be a much more informed patient, and no good Doctor should be threatened by that..Hema/Oncs have so many other types of patients, and MDS has so many variables patient to patient, they can't possibly keep up on things like clinical trials and such.....

As with anything on the 'net, don't post anything you don't want your Grandmother to see. Or derrogatory comments that should remain private conversations....but I would call them on it and see why is was necessary to put it in your chart without confirming 100% it is YOU!

Neil Cuadra Mon Oct 24, 2011 07:12 PM

I'm surprised to hear that a doctor, or somebody working for the doctor, would put copies of online posts in a patient's medical record without their knowledge. Did you ever mention Marrowforums to your doctor or did they find you online entirely on their own? Do you plan to ask them about it?

I wonder if other doctors have done this too. I agree with Cheri that doctors would benefit from hearing more of what patients have to say, at least in a general way. But tracking you online, even when your posts are technically "public", seems like a questionable practice, especially at a site like this that purposely tries to promote privacy by letting you post with as little identifying information as you want. At a minimum it makes it harder to maintain the trust you need with your doctor.

Perhaps it's reasonable to expect that a doctor, doctor's office, or institution might monitor what's said about them online, as a way to gather unsolicited feedback or even watch for libel, but that's different than tying online information to specific patients. You are welcome to use another alias here to protect your privacy, but do you have a concern that they might recognize you from this thread too? It would be shame if you have to keep all of your future posts generic for privacy's sake, since omitting important details might produce less useful advice from other forum members, but that's a tradeoff everyone has to judge when they go online for medical advice and support.

Your medical records belong to you, at least if you're in the U.S., so perhaps this is one more reason for patients to request copies of their own files.

teller80 Tue Oct 25, 2011 06:48 AM

Hi Neil,

My doctor referred me to the AAMDS website, and from there I learned of this site. I too wondered about it being a questionable practice, and I agree that if I were saying bad things about the doctor it would be a different story. But I wasn't. And from what I remember, I don't think many (if any) people here post negative things about their healthcare team.

I thought about asking him about it. I was on the fence a long time, but ultimately chickened out. First, I don't think I was suppose to look in my file. I don't think they were suppose to leave it in the room with me either, but, two wrongs and all. I thought they might get "mad" at me for looking at it. Although for the amount of money my insurance has given them, I doubt they'd fire me as a patient. Does HIPPA apply to me? Second, I like my doctors. They're wonderful. I didn't want to put any awkwardness in the relationship by asking them about it.

Yes, I am afraid they might recognize me. The paranoid part of my brain made me create a new email account. I guess they could track my IP address, but I'm not that sophisticated to figure a way around all that. And I guess it doesn't really matter, if they figure me out they figure me out. I did nothing wrong (except look in my file, and even thats iffy as to whether it's wrong).

Maybe I should take a poll here - should I mention it or not. :)

Marlene Tue Oct 25, 2011 03:53 PM

Very interesting.....I find it odd they would put it in your file. I think I would have to address it just to find out why they felt it necessary to do so. Since you like them and have a good relationship with them, you can probably approach this with some humor. If they get mad at you because you looked at your folder, then that means they are feeling guilty and/or did something that appears to be a bit underhanded. And it can be a way to shift the conversation off of them to you. So remember, you did nothing wrong.

mausmish Tue Oct 25, 2011 11:53 PM

Yes, you should mention it. You've done nothing wrong. You have a right to view your own medical records. I believe it was unethical to put the posts in your file without discussing with you, particularly when they did not verify your identity. However, I have a feeling they probably did it with good intentions, so it would be better to avoid animosity and damage to a good relationship otherwise. Although what they did wasn't right, it's a shame more doctors don't take such an interest in their patients' thoughts and feelings and in forums like these. My two cents worth, anyway.

Neil Cuadra Wed Oct 26, 2011 03:44 AM


Originally Posted by teller80 (Post 20431)
Yes, I am afraid they might recognize me. The paranoid part of my brain made me create a new email account. I guess they could track my IP address, but I'm not that sophisticated to figure a way around all that.

Although Marrowforums knows your email address and IP address, that information is protected for privacy. Nobody else, including the doctor, can get to that information. They know only your username, what you say in your posts, and any public information you fill into your user profile, e.g., your location or mini-biography.

Lbrown Wed Oct 26, 2011 03:15 PM

I think that sounds a little bit creepy, and how does he know it is you? It could be anyone.


teller80 Wed Oct 26, 2011 04:27 PM


Originally Posted by Lbrown (Post 20449)
I think that sounds a little bit creepy, and how does he know it is you? It could be anyone.


Yes! That was my first thought - I felt stalked and kind of creeped out. How could they be positive it was me? I mean, between my username being very close to my actual name and dates of diagnosis and treatments, it would be pretty easy, but still. When I started using this board, I never gave it a thought about privacy. But, like I said, I never posted anything bad.

I feel a little like I'm in George Orwell's book. Big Brother watching!

Greg H Wed Oct 26, 2011 10:56 PM

Hi All!

I've been following this one with interest and have twice written a post and then scrapped it, because I'm not sure exactly how I feel about this. But I have two thoughts that may be useful (or not).

First, I have one doctor that's very computer literate and curious about his patients: Dr. Dumitriu, a fellow at NIH. I know he reads my blog, because he told me he does. In fact, he mentioned checking it before a follow-up call to tell me about my tiny telomeres. I like that. It means he's taking an interest in my case, and going to the trouble of checking up on how I'm doing. On the other hand, it's a public blog, with my name and photo on it, and he told me he was checking it out.

Second, I have another doc, Dr. Wall, my local hematologist, who hasn't yet incorporated computers into his patient communications. We communicate via fax, phone, and in person visits. If I send him a fax, his nurse puts it in my file and puts my file in his inbox. I wonder if the marrowforums posts wound up in teller's file the same way. That is, maybe not all members of the team are up to snuff on computer stuff, but one was, found the posts, and put it in the file for everyone to check out.

I'm not sure that helps (it may be even scarier). (You can see why I have written and then deleted this a lot -- I clearly have no idea what I think, or what I'm talking about.)

Anyhow, I'd suggest, the next time you're in to see your doc, that you casually bring up marrowforums again, and ask if they have ever checked it out. Maybe they will 'fess up. That way you don't have to 'fess up about sneaking a peek at your file (though, as others have pointed out, it's your file, and you have every right to look at it.)

I am sure this post is of absolutely no use, but I am not going to delete it a third time.

Take care!


teller80 Thu Oct 27, 2011 06:53 AM

Hi Greg,

Do you know how Dr. Dumitriu found your blog? Did you mention it to him, or did he stumble upon it. If he stumbled on it, how did that happen? If I would do a google search, how long would it take me to find your blog, assuming I did not use your name in the search box? I doubt he googles his patients names, so what search words would he be using to find your blog. Whereas, I just did a google search on "Dr Dumitriu" and your blog was on the first page. Do you think he has a google alert set for his name, and thats how he found your blog? (I'm at the point of deleting this post too, because I can't find the right way to say what my brain wants to say).

That's not a bad idea, at my next visit to work the words "marrow forums" into the conversation. Maybe I'll try it. Thanks for the suggestion.

Greg H Thu Oct 27, 2011 08:08 AM

Hi Teller!

I'm relieved to hear my ramblings had some value; I'm beginning to think low Hgb is affecting my ability to string together a coherent sentence -- or, at least, my ability to string together a useful sentence.

I'm not sure how Dr. Dumitriu found my blog; the very first time I met him, when I entered an exam room at NIH, he was sitting at the computer reading my blog -- and called my attention to that fact. I figure he Googled me, though it's possible I had mentioned to one of the other docs or nurses that I was doing a blog. I met Dr. Dumitriu on a follow-up, after my two-week Campath stay at NIH, and I think I had told several folks that I was blogging about that experience.

Your Google alert idea makes sense with some docs and in some cases, though not in this one, since Dr. Dumitriu was reading my blog before I met him or mentioned him on my blog.

I have often found that Googling the names of doctors mentioned in Marrowforums posts will in fact produce links to marrowforums relatively high in the search results.

Take care!


Andrya D Thu Oct 27, 2011 11:25 PM

I would be livid! I am not too fond of my doctor's though. I would definitely ask them about it. Phrase it like, "what do your hospital SOPs state about obtaining information about patients from online sources such as social networks, blogs, forums, etc." Or, "Does your clinic/hospital make it a practice to go online to find information about your patients."

I find it a bit like spying. The doctor's will treat you differently if they find out that you are doing something you shouldn't or trying to get other opinions. They will label you as "non-compliant" and will never trust anything you say ever again. At least that is what I was told about my doctors. Unfortunate.

I worked in healthcare and unless this is directly addressed to your doctor then it shouldn't be in your health records. Remember, that when you sign a medical records release, those parties have access to your entire medical record. So insurance companies, social security, FDA (if you were on a clinical trial), etc. have complete access to your medical record, including correspondence.

Although, anything you put on the internet is free for anyone to see. I hope my doctors read my posts...maybe they will get the reality check that desperately need!

Lbrown Mon Oct 31, 2011 02:10 PM


I'm beginning to think low Hgb is affecting my ability to string together a coherent sentence -- or, at least, my ability to string together a useful sentence.
I am well past the point of "beginning to think"... (not that low HGB makes thinking any easier either...)


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