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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. These message boards serve a great purpose in the fertility cyber community, not only offering information, but also a place to find support and connection with other patients, but they may not be the best place to get a doctor referral or the skinny on a particular doctor or center because you might actually be talking to "the competition" with an agenda in disguise!
It is a huge embarrassment to the fertility community that there are fertility professionals who are hijacking some of these boards to their own ends to drive traffic to their own practices and are literally preying on patients who think they are in a safe message board community run by patients for patients.
You need to know the facts of what is happening on some of these message boards and if you are hearing a great deal of center bashing and directed referrals to "the best doctor in the universe," buyer beware.
Pamela Madsen, one of the nation's most outspoken and recognized fertility educators and patient advocates. Pamela Madsen is The Director of Patient Education, at East Coast Fertility and The Founder of The American Fertility Association.
From sexuality to conception, Ms. Madsen is picking up the threads of the national dialogue she began as the founder and first Executive Director of the American Fertility Association, a national patient education and advocacy organization. Over the last two decades, Ms. Madsen has helped shatter the myths and taboos that surrounded fertility, infertility and its treatments. She has been one of the leading voices for full reproductive rights for everyone, regardless of marital status or sexual preference. She has made the biological clock, one of the most poorly understood aspects of reproductive life, a key element in her unique approach to fertility preservation education.
Read Ms. Madsen's Blog at www.thefertilityadvocate.com
Add a Comment13 Comments
Here are some great sites for fertility information......
June 18, 2009 - 4:03pmhttp://www.hfea.gov.uk/
http://ihr.com/
http://www.findinfertilitydocs.com
www.findafertilityclinic.com
http://www.oneatatime.org.uk/
http://news.bbc.co.uk/1/hi/health/4112450.stm
www.infertilityspecialist.com/
This Comment
Just wondering if the reason you included a link to the fertility clinic you work for is because you are one of the people looking to "drive traffic to their own practices"? I agree that impersonating someone is not ok to do, but if a person is perfectly honest and promotes a clinic then there is nothing wrong with including it in a discussion board, article talking about discussion boards (as you've done), or anywhere else.
June 18, 2009 - 3:57pmThis Comment
Dear Anonymous:
EmpowHer encourages us to include links. I will be including links to lots of places. I totally agree that when people are transparent - that is great. I am transparent about who I am and what I do - I have been a patient advocate in this field for 20 years and I am responsible for the passage of mandates to provide fertility care for everyone across the country. I want all patients to have access to care and information - and great resources. I find it a problem when people pretend to be patients to lure patients to their programs. That was the point of the article. I not sure that you understood what I was saying. There is nothing wrong with marketing - there is something wrong with pretending to be what you are not.
Good luck in your journey -
June 18, 2009 - 4:29pmPamela Madsen (totally NOT Anonymous)
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