the fertility advocate

Talking, writing, educating, and change making in the field of fertility for more than twenty years

Industry, Non-Profit, Consumer, For Profit, or Professional Patient Education – What's The Dif in The Land of Infertility?

So a press release just came across my “desk”. It’s from Fertility Ties, one of the new “for profit” patient education community sites. I really like Fertility Ties – which is a social network for fertility focused conversation, support, and information. And their press release was bragging on their new site design with unique features to help patients find fertility doctors, a new fertility store, an ovulation calendar that is free and easy to use, plus so much more.

Fertility Ties, if you have not checked it out yet is a unique site which allows their patient community to network in real time with each other and medical professionals. I write for them – and answer questions. They are good people. And they are clear about their mission – the guidelines and who they are (a for profit patient education community) just like Fertility Authority .

It’s pay to play for the medical community – if you want your ads running on sites like Fertility Ties and Fertility Authority – there is a price tag attached for most everything. Hey it’s America and these guys are up front and clear about who they are, their mission and what service they are supplying. It is clear that they are not a charity, a non profit, a trade organization, or a pharmaceical company. What they are is this new breed of patient education start up -and they do what they do damn well. Content is always fresh – and the multi media is engaging.

The medical community that has been attracted to these sites have been impressively high quality. I like that too.

This new breed of consumer education does not hide under veils – and there seems to be no conflict of interests here. They are who they are – and they are upfront about it. What is totally amazing about a spade being a spade is that there is no feeling for the patient of being manipulated in any other way than might be expected by a basic ad in a paper.

As I mentioned in eariler posts – I am getting grumpier by the day. I might have to change the name of my blog to the cynical old fertility advocate. But come on folks – there was a day when infertility patient organizations were run by infertility patients. We were an exclusive club. You couldn’t join unless you had directly felt our suffering and you didn’t supply any kind of services. If you got pregnant – we often threw you out. We could were often a heartless bunch.

I know – I sat around those kitchen table fighting about which color the newsletter would be!

There were no doctors, pharmaceuitcal representitives, egg donor, adoption, or surrogacy agencies on the board helping to direct the mission and vision of “patient organzations”. The changes began once we started to add in the “advisory boards”….and then things began to morph.

As things morphed – back in the olden days- patient organizations had concerns about whether professionals would take over the boards. And so guidelines about how many infertility patients needed to be on the board of directors in order to maintain the consumer driven integrity that made an infertility organization an organization that was indeed run by patients for patient. I wonder if there is anybody left at any of these patient organizations that can remember this little bit of historical memory!

And I am talking “pure” patients. Not us guys who were patients and then turned “pro”. This happened all over the country in so many of the patient groups. If was as if back then they could smell the smoke beginning to burn.

That doesn’t seem to be the case anymore – and I wonder if anyone cares. The lines between professional associations like The American Society of Reproductive Medicine who used to only put out professional guidelines and education are now in the business of developing patient education.

Why wasn’t that left to patient groups? Didn’t they trust the patient groups to do their job? Why did they have to put their thumb in consumer education? Some say – and of course that is hear say – that they didn’t trust the patient groups – that the professionals groups felt that they could do a more reputable job.

I don’t know the truth about the “Why” of it. But to be honest – I don’t love professional groups doing consumer education. It’s like the foxes feeding the hens. Not that our friends in medical professional trade organizations are foxes…but its a great metaphor

I liked it way better when consumer organizations that were run mostly by consumers, developed the content of patient education materials in the field of fertility. It had a different voice and feeling to it.

But maybe it’s because the make up of the major patient groups in this country have become very much like a board of directors list from a professional group. It’s hard to tell the difference. And pharmucitical companies are in are the show too – developing “patient” websites that do not immediately feel like a pharmaceutical website. And this is done on purpose! They don’t want the consumer to feel like they are visiting a pharmaceutical website. They want it to feel like a “patient consumer” website. How is a patient suppose to tell the differences between all of these organizations and companies who are looking to educate them? Read the fine print?

If board members of patient organizations get the best pieces of the marketing pie – is that a conflict of interest?

I don’t know….I am just asking the questions here.

Sometimes it feels like we have become a bit like the food industry. The infertility field grew up really fast – and we learned how to create a huge marketing machine to the consumer. Perhaps it is time to slow down and pay attention to how it all looks and feels to people who are not a member of our club. There will be a time when a blind eye is not turned. And people who want to know how that chicken was grown and why it was picked to serve to at this family celebration.

And I was a part of the madness – the evolution of it all. I was there for the good, the bad and the ugly in the field of reproductive medicine. And I am no Snow White. But It’s often people like me who need to claim responsibility for once being a part of the emerging problem to step out of the simmering smoke and ask if anyone else smells anything funny?

I would love to see us slow down and get clear about all of our identities in the business of patient education. We should all know the differences between industry, non profit, consumer, for profit and professional education. The distinctions should be as clean and clear as a sun shower on an August day.

How did we get it here? And should you care?

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About Pam Madsen
Talking, writing, educating and change making in the field of fertility for more than twenty years
5 total comments on this postSubmit yours
  1. I know PVED is purely patient education. There’s never a charge to our parents. The way we keep afloat is through clinics, lawyers, and agencies who advertise through us.

    What’s odd to me is that I keep hearing that Infertility is a billion dollar a year business, but my organization sure hasn’t seen any money and I sure haven’t made any money — in fact, truth be told I don’t even draw a salary and I serve oodles of parents and parents-to-be.

    So while I get what you are saying — I haven’t gotten that piece of the pie because at PVED we don’t have the money to even make a pie yet.

    If that makes sense.

  2. Pam, I also see where you are coming from, but it is often these professionals that keep these businesses afloat. I, for one, can honestly say that I educate my patients for their own good, not with what lines my pocket. How can I do that? Easily, I tell them what this is all about, not what makes me more money, and then, amazingly, I get more referrals – because I tell them the reality of what this industry is all about. I am a complete realist, like it or not. I sure there are conflicts in many places, but I do my absolute best to keep those in check and in focus.

    In fact, I have never been an infertility patient, merely an egg donor, but my sister had issues sustaining a pregnancy and had to seek the help of an IVF doctor, and my own brother and sister-in-law just had their twins via IVF and surrogacy, so I do know the issues that are faced when money and education are mixed.

    Pam, don’t stop asking these questions because we need these professionals, including myself, to educate with these issues in mind. Thanks!

  3. Thanks so much Pam for your always insightful perspective! I come about this from a totally different angle. You see I have a PhD in Behavioral Sciences and Health Education and am a certified health education specialist. I work with many companies, non-profit organizations, and government agencies to “professionally” develop, implement, and evaluate patient education programs.

    Effective patient education means more than just providing information. Instead, it is meant to stimulate and document change—in knowledge, attitudes, perceptions, and/or behaviors. It is expected that these changes will lead to better health—both in terms of individuals and society as a whole.

    In my opinion, this has been a major missing piece in the fertility field. While everyone wants to provide information and education to patients, exactly what is it we want people to DO with the information we present, whether we are a clinic, patient organization, pharma company, etc? How will this information impact patients’ ability to make appropriate and healthy decisions? And are we succeeding in our messages?

    While I think everyone involved with the fertility field has a unique perspective and value to add in educating patients, there is no one pulling all of these varying pieces together in a strategic manner. In general, we need to change the way most people think about fertility so that people can get the fertility care they need. In an age of Jon & Kate plus 8, the Octomom, and the 74 year old pregnant woman, I see a lot of opportunities to impact the general understanding of fertility. How do we want people to view fertility—what is our overall unified message?

    I have been accused by members of the fertility field for being “naïve” and “overly enthusiastic” as if this is a “pie in the sky” type of attitude. But, I have spent years doing exactly this in many other areas of health care supported by many other prominent and successful health organizations and businesses. While I don’t pretend that this is an easy undertaking, it has worked in the areas of depression, erectile dysfunction, HIV, and even breast cancer to name a few. All of these health issues were severely misunderstood for a very long time, and the associated stigma often prevented people from getting the care they need. Isn’t this what we struggle with in the fertility field?

    The only way I see anything changing is if we all work together to establish some tangible goals of what we want to happen as a result of educating patients and come up with a strategic plan for achieving these goals. As you have pointed out Pam, this type of fragmentation with regard to patient education hasn’t worked so far, and I don’t see it working in the future either—not for the patients and not for the professionals. We need to shake things up and try new tactics regarding patient education that will have a greater impact and prove beneficial for all of us!

  4. Ahhh the good ole’ days….I remember way back when in 1998 when I started my own personal surrogacy journey…and there was little to be found on the subject…and now it’s hard to know just where to turn with so much information out there. I love the fact that you reminisce about the past but I think that the future is in education that reaches a crossed all infertility industry professionals. I don’t believe there is money to be made by professionals holding back information any longer. (or using the “fear factor” in their marketing) When Intended Parents can go online and do their own research or at the very least confirm what they have heard from their RE, Attorney or even their agency, that alone wipes out any reason for subterfuge.
    Sharon LaMothe
    Infertility Answers, Inc.
    http://infertilityanswers.org/

  5. Theresa – You my dear or not “merely an egg donor” — You donating your eggs was probably one of the most selfless, gracious and generous things a woman can do in her life. Your gift gives women like me the chance to fulfill the dream of becoming a mother.

    Never sell yourself short. There need to be more Theresa’s in the world.

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