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What You Need To Know When Posting On An Infertility Message Board

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Recently, I have been checking out the big infertility/fertility message board communities. I never thought that much about fertility message boards until recently. After all, I was familiar with them - I ran them when I was the Executive Director at The American Fertility Association.

They seemed pretty straightforward to me. Patients got to post questions to reproductive endocrinologists and other fertility experts and the experts answered them.

People who were experiencing reproductive difficulties could connect with each other and find support and comfort in each other. There was nothing complicated about that, but then I found out that there was an underbelly to many of the fertility message boards that floated around the country, and the underbelly was not transparent to the unsuspecting user.

People are seeding some of the message boards out there. Well, to speak frankly, there are people who work in the infertility community who spend a lot of time reading these message boards, pretend to be patients, and direct patients to their own IVF Centers!

When I found this out by listening to some of the very people who were doing this, I wanted to go shower. They think that they are clever marketers and some even think that they are helping patients by "listening in" to what the patients are talking about and then stepping in with referrals and loaded advice. To me, it is cyber ambulance chasing.

I know this is hard to believe, but I promise you it is true. So how do you know if you are talking to another patient or an impostor? I don't have an answer to that.

Fertility message boards can be a wonderful source of information for fertility patients, especially when they are able to ask questions directly from a doctor or other expert.

I want to be clear that I am not knocking message boards. They serve a great purpose. I am a supporter!

And, perhaps on many message boards that are run by patient groups and fertility centers who put their name on their message boards, it is can seem much clearer on who you are talking to.

Add a Comment13 Comments

EmpowHER Guest

This type of practice is a very unfortunate by-product of the Internet age. Service providers, including doctors and medical clinics, all over the country are beginning to pay more attention to their online reputations. In fact, there are even companies and consultants out there that specialize in helping doctors manage their online reputations and relationships with patients. I think all that Pamela was trying to do was to remind us that the Internet is a powerful tool and the importance of "buyer beware." The Internet is a fabulous place to gather information, but with every good comes a little bad. As always, thanks for taking the time to look out for us Pamela! ~Evelina W. Sterling

June 24, 2009 - 4:07pm

You are right - Anon - we see this differently. Perhaps no other professional advocate has spoken out because they didn't want this kind of flaming. Trust me it doesn't feel good. I have done what I can do. Not every one is experienced at weeding out the bad seeds - not everyone knows the inside and out of fertility boards like you seem to - and I have never seen a warning posting on the boards about this practice - so if you are an insider as I am not - perhaps you can create that change. I don't know you - and you don't know me - but I have worked for the rights of fertility patients for 20 years - passing insurance mandates - taking on the FDA - and working with the CDC to help our community. Not every likes me - and that is okay - I am doing the best that I can - and I can sleep at night. I don't see myself as a provider as I have spent 20 years as a non profit advocate. It is how I am in my heart.

Yes - I work now. Those IVF kids of mine like to eat.

I wish you all the best - and you keep rocking and rolling!

June 24, 2009 - 5:36am
EmpowHER Guest

If I had the information she claims to have I would be all over the internet wth who it was that that was falsely pretending to be patients that would stop it!! IInstead we get "just go to my docs caht room". We are much smarter than you give us credit for. Sorry but this just makes me angry. A real I throw caution to the wind person wouldnt care and would expose each and everyone she knows. I wont bother to argue this anymore Im just not as good at it as Pamela.

June 24, 2009 - 5:09am
EmpowHER Guest

you use the word possibly, people on the boards have always been aware of this problem, we know how to weed those cliinics out. All i was saying that Pamela says she knows who some of these are from being on the inside, why not just tell us if she is truley on uur side, open your eyes. She is the paid clicinal person driving patients to the docs whether she is upfront or not, the rest of us are unbiased and helping each other out. Without saying what she knows and who is doing this she defames all of us on the boards and chat rooms., Im not sure why it doesnt bother you

June 24, 2009 - 5:02am
EmpowHER Guest

It's hard to understand the hostile comments here. Seems pretty clear to me that Ms. Madsen was giving information that we possibly didn't have, concerning how the message boards were being used. When I read this piece I felt relieved to know that I had an "insider" who was willing to be out about who she is and that she was willing to share information that might even make her unpopular in the industry. Far from using this as a way to get hired next, this would make Ms. Madsen extremely vulnerable as she is willing to tell an unpopular, inside, hidden truth about the "industry". I love knowing that someone's on my side!!!!

June 24, 2009 - 4:42am

No, that is not what I am saying. I am saying that you should know who you are talking to. Plain and simple. Again - I am very sorry that this information is upsetting - and I don't need to name the messages boards - it is not the point. If this is happening on one or two - why not three or four. I have no motivation at all to upset people. I am on the side of consumers. It is the keeping quiet that would have been wrong.

Take care -

June 23, 2009 - 8:15pm
EmpowHER Guest

But when you cant even name one , its hard to beleive you , Im sorry! If you expose even one maybe you can start to scare them from doing this, again that is if what you say is really true and you dont seem to concerned to prove your case. I urge everyone, be trusting, and be carefull most people out their are honest and most replies you get on these message boards are from girls that have gone through this like you. If your tyring to find the right doctor you wont get an unbiased opinion from a doctors site, and many of us are tyring to do just that.
Again Pamela your just to hard to beleive as being unbiased, your basically telling patients the only place to get a "referral" is from a doctors website? Maybe its a good place for medical information, but I dont remember one of these doctor sites saying "hey Im good , but my competitor is better, why dont you go see him or her? "

June 23, 2009 - 7:46pm
EmpowHER Guest

I find it offensive that you are critical of these boards that have helped so many women confer amongst each other and give valuable information to each other, and without singling out one board or one practice to prove your point you simply refer everyone to your new 'chat' site and tell everyone dont beleive what you hear about any other clinics because it could be the clinics themselves. Either prove it and divulge these boards and those clinics responsible or just admit you are doing this to drive patients to your BB and convince women to ignore what their friends are telling them. Thats a disgrace to the entire community of women that have come together as friends. We want those clinics out of our sites as much as you do , if we would find them we would expose them. Why dont you!! Its not fair to scare women away from these sites and tell them to not trust anyone, without proof!! Tell us what you know or are you afraid it might hurt yoour next paycheck with the next clinic you fool into hiring you.

June 23, 2009 - 6:59pm
(reply to Anonymous)

My suggestion is that you use public message boards as a source of support and friendship not for referrals. But that is just me. My intentions in sharing what I know is simply to alert users of the boards to be careful. it is not about scaring anyone. I am quite clear that I support message boards. I included a link so that people could see a medical message board. Since it was upsetting - I have removed it. The link was so not the point.

I am talking about ambulance chancing in a space that is easy to misrepresent.

I am sorry that you feel like you have to attack me simply for alerting patients. And what happens in one place - happens in other places. This has nothing to do with one single board or community. When patients post medical questions on medical boards - this is very straight forward - they know who they are talking to and where they are - what I am discussing in my article is something different. Killing the messenger doesn't change the message.

June 23, 2009 - 7:36pm
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