infertility awareness

Why Would Anyone Else Care About Infertility? How I Became an Ally to a Community I Had Nothing to Do With

By Griffin Jones

"Don't worry, you can always adopt"

I don't know if I ever had a conversation with anyone struggling with infertility (about the topic) before a few years ago. If I had, I probably would have said something silly like the above. I would have said it with the best of intentions, and hopefully, I would have kept an open mind. I knew nothing about infertility.  I had barely heard of IVF. I had no idea what a reproductive endocrinologist (RE) was. I am a young male with zero medical background and no personal connection to infertility. On paper, I was the least likely person to become an ally of the infertility community. And that's the very reason it seemed so important to become one.

caring about infertility

expanding the community

Whatever the issue at hand, progress will be limited if the consequences only apply to the people directly affected. This is true if we're talking about small issues at the local school board or large ones like repealing laws that ban same-sex marriage. Every community needs allies who are not "native" to their background for credibility and traction. I found infertility awareness to be an important concern that needed attention from more people than only couples struggling to conceive. It looked like they needed reinforcements, might be one way to put it. Still, there are infinite communities that I don't belong to that need support from the broader public. Why this one?

acknowledging the right to feel

There is a particular nuance in the way the infertility community is treated that piqued my curiosity. I still can't totally articulate it, but it has to do with we, as a society, not letting people feel what they need to feel. Responses like "at least you have one child already", or "stop worrying about it and it will happen" are pretty consistent with how we react to a lot of feelings that we don't totally understand. We jump to the "solution" because we want the feelings of hurt to end immediately. Sometimes out of compassion, sometimes out of laziness, and probably anywhere in between.

"You'll find someone else."
"You'll land a new job."  
"It's not so bad."

I wanted to shut up for a minute and allow people their right to feel.

ThAT blurry area between Sympathy and Empathy

Judging how other people should feel seems to stem from trying to equate someone's reality to our own. We often compare experiences as though they could possibly be the same, instead of drawing from them to imagine how someone feels. describes sympathy as "feeling compassion, sorrow, or pity for the hardships that another person encounters, while empathy is putting yourself in the shoes of another".  The only way to know the pain of infertility (or cancer, or the loss of a spouse, or absolutely anything you could imagine) is to experience it personally.

Relating to imagine what people feel, not knowing exactly what they feel.

Relating to imagine what people feel, not knowing exactly what they feel.

We might not be able to fully understand someone's experience that we don't share, but we can usually empathize when we try.  I've never had to go through the "two week wait", but I know how anxious and frustrated I become when someone tells me to "just relax". People might not pester you about when you're going to have kids when that's what you want more than anything in the world. You may, however, know the soul-wrenching feeling you get when people ask you about a life goal that you're trying your best to achieve, and you have no idea when it will happen. Interacting with people with infertility has made me more aware of imagining what people might feel, in all kinds of scenarios, instead of judging what they should feel.

Playing for the team that drafted me

I noticed the community that emerges from this longing to be understood when I first started doing social media for fertility centers in 2014. Some people who had children because of assisted reproductive technology (ART) were so overjoyed that they wanted to tell the world about it. The emotional attachments they had to their doctors and care team was palpable. They exuded a sense of triumph that comes only from a prolonged period of hard times. I had worked with several other business categories in the past and never seen anything like it. Then I wondered about the people that haven't had success or are still on their journey. What do they need help with? So I took it upon myself to e-mail the group leader of every RESOLVE support group in America. You'll be able to read more about that in my memoir, The Unlikely Tale of How I Became Besties with the National Infertility Association. Turns out, you're not supposed to do that. Before the nice people at RESOLVE could contact me to say "hey knock that off, guy", I had already talked with dozens of people dealing with infertility over the phone and via e-mail conversations. Their reception of me sealed the deal that these were people I could get behind.

If you don't get this analogy, you're going to have to re-watch Jerry Maguire

If you don't get this analogy, you're going to have to re-watch Jerry Maguire

I was completely upfront about who I was. "Hi, I'm a marketer and I'm thinking about starting a business for fertility practices. I would love to know what information you really wanted from your clinic(s) that you just couldn't get". I'll translate this for you:

"Hey, I'm some dude that knows nothing about you, nothing about your problem, nothing about medicine, and I would maybe like to possibly make some money some day".

"Go f yourself" would have been a perfectly reasonable response. But I didn't get that at all (maybe once). Instead, people were generally very eager to talk to me. They told me a lot. They told me about a whole bunch of stuff I had never heard of before...stuff that most people would consider very private that I didn't even ask about. They even thanked me for doing my research. Thank me? A marketer? Didn't they know that marketer is just one or two rungs better on the scum ladder than investment banker? I had never been acknowledged like this before--why them? I realized right away it was because they were yearning to be listened to. I learned first hand how little they felt understood, even by their clinics. I felt armed.

I jumped on Instagram to engage with the #ttc (trying to conceive) community there. Same thing. "Hey everyone. I'm a marketer. I don't know your journey, but I promise I will out-listen anyone who tries to compete with me in the business I'm building". Once again, I've been totally humbled by the welcome I've received, both online and in person. I get occasional shout-outs, words of encouragement, and people keeping tabs on me. I've been a marketer for ten years now and I've never received that from any other segment I've worked with. That is a very rewarding thing about working with a population with whom the stakes are so high. Shit matters. People don't feel that way when they buy a Hyundai Sonata. Even though I work with clinics, and not directly with patients, it's the patients that get me excited about what I do.

Stay classy, #infertilitycommunity

My guardedly optimistic prediction for the future is that public awareness around infertility will grow significantly. When it does, I hope the discipline of listening to and trying to imagine the feelings of others wins over the comparison of struggles. Affording people their right to feel and the humility of using experiences to empathize instead of drawing contrast are amazing lessons in humanity. I realize that I am totally idealizing the values of a very diverse and massive population of people. But that's what they are--ideals. And those are what made me want to be an ally to a community I originally had nothing to do with. 


5 Lessons from Advocacy Day That Will Teach You to Never Mess with The Infertility Community

By Griffin Jones

What a day. Legislation hasn't been this much fun since School House Rock. RESOLVE, The National Infertility Association, held their 2016 annual Infertility Advocacy Day at the Capitol on May 11. Over 200 advocates came to Washington, DC to meet with their legislators regarding a few key issues that deeply affect both the infertility and military veteran communities. This was the largest advocacy day that RESOLVE has hosted to date and we hope it's only a glimpse of the momentum that is building for the future. If the relationships made between advocates are any indication, this is a movement set for growth. If you've ever wanted to connect with the infertility community, you need to come out for Advocacy Day; plain and simple. Read on to determine if it's the right fit for you. Let's start with some background on the issues for which we went to advocate:

Some of the NY Delegation with RESOLVE's Barb Collura. Photo courtesy of @the2weekwait

Some of the NY Delegation with RESOLVE's Barb Collura. Photo courtesy of @the2weekwait

Women Veterans and Families Health Services 
S 469 in the Senate and its companion in the House of Representatives, HR 3365, introduced by Senator Patty Murray (D-WA), would lift the Department of Veterans' Affairs' (VA) current ban on IVF for veterans and expand Assisted Reproductive Technology (ART) services available to active duty service members through the Department of Defense (DOD). Senator Murray’s bill would also provide access to fertility treatment for spouses and allow for adoption assistance. This piece of legislation is extremely important to the infertility community and to U.S. military veterans. Call, e-mail, and tweet your lawmakers to ask them to co-sponsor this bill.

Certain Veterans with the Loss of Use of Creative Organs
A bill proposed by Rep. Jeff Miller (R-FL) in the House of Representatives (HR 4892) will allow for veterans wounded in combat to receive an extra $20,000 in compensation for family building purposes which may include ART or pursuing adoption. In my opinion, this is weak stewardship of our veterans, but it has bipartisan support and is likely to pass. We advocated for Congressman Miller's bill so that, in the meantime, veterans at least have some help in building their families.

Adoption Tax Credit Refundability
As an American voter and taxpayer, you would hope that bills S 950 and HR 2434 would be a no-brainer for both parties in the Congress. The Adoption Tax Credit has not been refundable since it was made permanent in 2012. We are asking for refundability to be restored so that adoption becomes more feasible for lower and middle income families. This bill has support across the spectrum, it just needs enough people to give it the attention to move to a vote.

"The Plan"
Rather than a piece of legislation, the National Action Plan on Infertility, issued in 2014, was a declaration by the Centers for Disease Control (CDC) that infertility is a public health issue. Advocates are looking for senators and representatives to champion the plan and stand up for infertility as a national concern. Will that legislator be yours?

1). Stand Up for our Vets

Now that you know a bit about the bills that we advocated for, the rest will make sense. On Infertility Advocacy Day, there is no distinction between the needs of military veterans and those of people struggling with infertility. The communities are united in their work for what is right. So there couldn't have been a more fitting way to open the welcome reception on May 10 than a few words from three wounded servicemen and their wives who were awarded with RESOLVE's hero awards. We heard from soldiers and Marines who were shot through the neck by an enemy sniper and suffered explosions from improvised explosive devices (IED). Americans are disgusted when they learn that our wounded warriors are unable to receive treatment for the consequences of the wounds they sustained while in service to our country. It's disgraceful that our government will not allow the VA to enable them to build their families.  Were there more public awareness about Congress's unconscionable ban on IVF for veterans, it would be lifted in a heartbeat. This is where we need your help in letting people know about #IVFforvets. Public awareness is growing, as is news coverage here, here, and here, but we haven't reached the tipping point yet.

These Hero Award recipients speak about their struggle to build a family. Photo courtesy of @Recombine

These Hero Award recipients speak about their struggle to build a family. Photo courtesy of @Recombine

2). Be the change you want to see in the world

RESOLVE President and CEO, Barbara Collura, introduced the vice-chair and chair of Advocacy Day (respectively) , Candace Wohl, a RESOLVE peer support group leader from Virginia and co-founder of Our Misconception, and RESOLVE board member, Lee Collins. "I decided to do what was just," Wohl said, referring to her decision to speak out about infertility and advocate for the opportunity of building a family for millions of people.

"I see a room full of world changers," Collins added as she addressed the crowd of 200 advocates. The speakers made clear that Advocacy Day is about taking action. It's an opportunity to make a visible and real change.

3). don't take no for an answer

Breakfast on Wednesday morning began our briefing on the issues. We continued with our veteran speakers as Rep. Tammy Duckworth (D-Illinois) spoke to us about her journey as a wounded warrior, and someone with infertility who utilized IVF to conceive her daughter. "Military women are twice as likely to be infertile as civilian women," Congresswoman Duckworth informed. Ms. Duckworth encouraged the advocates not to take no, maybe, or lip-service yeses for an answer. "This isn't my house, it's your house," Duckworth said of the Congress. "It belongs to you the American taxpayer"

Rep. Duckworth addresses the advocates/ Photo courtesy of @BarbRESOLVE

Rep. Duckworth addresses the advocates/ Photo courtesy of @BarbRESOLVE

4). Make democracy work

It was time to get work. Each state's team headed to their senate and congressional appointments. Most of us met with the staffers responsible for veterans' affairs and/or healthcare but some of us were lucky enough to meet with our legislators in person. I very briefly ran into Sen. Chuck Schumer (D-NY), Rep. Chris Collins (R-NY), and even got a bonus Charlie Rangel (D-NY) selfie! Some state groups were larger and some advocates went alone to their meetings. The RESOLVE staff did an excellent job of making sure that first-time advocates, or people who didn't feel comfortable flying solo to meetings, were accompanied by an Advocacy Day mentor; someone who has previously advocated for infertility issues on the Capitol. 

5). Reflect on the progress made and the work left undone

Finally, we wrapped up the day for a farewell briefing, to commiserate on what we had accomplished and largely to thank and congratulate the people who had done such a good job of putting the event together. The RESOLVE team did an incredible job of organizing the scheduling, messaging, promotion, recruitment, and followup for their day. The get-together at the end of Advocacy Day was a moment to appreciate how much RESOLVE does for people with infertility, and how the community wouldn't be nearly as cohesive without them. We owe them a debt of gratitude for everything they do to bring patients, physicians, medical professionals, mental health professionals, family building professionals, and allies under one banner. 

lasting impact

Sometimes people with infertility express a lack of control and a strong feeling of isolation with respect to their disease. But at least for one day, I didn't see any of that. I saw a powerful, focused community of people who were prepared and diligent in making an actionable change for their peers. In my opinion, the best part about Advocacy Day is the friendships that are made. When an advocate sees someone else walking the halls of the Capitol buildings with an orange ribbon, there is an instant bond that leads to taking impromptu meetings with congressional staffers together, or at least an #IFadvocacy selfie. Many of the advocates had met each other through social media, but never in person. The love and camaraderie between these folks is real and invigorating to be around but don't take my word for it, look at #ifadvocacy on Instagram and Twitter. I hope you'll experience it for yourself in 2017; if you participate in the infertility community in any way, there's no other day like it. 

24 Things You Would Never Know About Infertility Until You #StartAsking

By Griffin Jones

Last night I had one of the coolest conversations that I've had in a little while. The best part, is, we recorded the whole thing. This week is National Infertility Awareness Week and I wanted to participate in the #startasking dialogue, not just with sound bytes or with a scripted narrative, but a candid, meaningful conversation between people who really want to see the infertility community receive the recognition they deserve. So I invited a few cool people to chat on Blab.

  • Chris and Candace Wohl, are a married couple who have been on their infertility journey for nine years. They have a daughter through surrogacy and they write the blog, Our Misconception
  • Angela Bergmann and her husband have unexplained infertility. Angie writes the blog, Rad Kitten, and she leads an infertility peer support group in Ohio.
  • Fran Meadows struggled with infertility for seven years. After she had her son she decided to break the silence about her experience and author the book, The Truth Behind the Secret "Infertility".

Watch our conversation about infertility and how much you can take control by promoting awareness.

Despite no shortage of technical difficulties, Mid-Atlantic thunderstorms, and Blab still being in beta (Watch this at 2:38 if you don't mind the f bomb), we farmed some really valuable ideas from our talk. Here's what you missed

On speaking out about infertility

"#startasking doesn't have to be about your personal infertility. We need people to start asking their employers, and doctors, and healthcare providers and anyone who will listen to give us access to the family building options that we just don't have access to right now". --Angie

"It's up to you to set the boundary of what you're willing to share and what you're not willing to share. Maybe you don't want to share anything at all and that's totally fine. You set those boundaries at the beginning".--Angie

" For the first two to three years of our journey we didn't tell anyone. We didn't have any support. We weren't seeking counseling." We didn't know about organizations like RESOLVE. I just felt alone."--Candace 

"Before we had our son, I felt like it was easier for my husband and I to deal with it as a couple than to open it up to the world to know every step we were going through."--Fran

"It is very common, that people keep silent [about infertility]. There are so many people that are afraid to open up and they relate to someone who felt their pain".--Fran

"Being able to talk to me, since I've always been open about infertility has helped people figure out that maybe they were being silent not necessarily because they wanted to, but because they didn't know how to broach the topic with their family members."--Angie

"We decided to take our struggle and make something positive out of it."--Candace 

"Even though we have our daughter, we still are infertile. Somehow getting all these voices together and talking about what we go through makes it that much easier" --Chris

"You can set boundaries with your family members: this is what I need from you, this is what I don't need from you."--Angie

"We realized that we needed to debunk the stigma. We need to help other couples who may be on the fence. We need to help couples who may not know there are options like counseling and organizations like RESOLVE that can help".--Candace

On the misunderstanding of infertility as a disease

"There's just a lot of misunderstanding as to what the options really are."--Chris

"I don't have to have had a child to have beaten infertility. I beat infertility every day because I own it. It's a disease. I could have five kids I'm still going to be infertile."--Angie

"The number one thing I get from people is 'well if you're having trouble having kids, that means you just get all kinds of sex, right?'. There's going to be a whole series of bedroom antics that have nothing to do with having fun".--Chris

"It's a disease. Would you be afraid to tell your family that you had diabetes?" --Angie

"Adoption solves the need for children. It doesn't solve infertility."--Angie

On being your own advocate

"Millennials are hungry for information. The key is to provide them with the right information. They need to look at SART data, at ASRM, at the CDC, and they need to look at RESOLVE. It's all about being your own advocate and taking this information to your RE".--Candace
"Being your own advocate gives you more confidence knowing what you're doing getting into whatever treatment you choose. The doctor is the doctor, but sometimes you have to question certain things to know that you are making the right decision."--Fran

"If REs have that bedside manor where they appreciate you asking questions it helps you move forward in the journey with trust". --Fran

On taking action to make a change

"We need to get more people to advocacy day. We're never going to make a change until they see 1,000 of us walking to our appointments. We need to get laws passed to get the national recognition we need".--Angie

"There's so many people who are angry and who want change. You can do it. You have a choice. You have the right as a U.S. citizen to make a change. Join us and change the world so that family building is no longer a financial barrier. So that people can get treatment for their disease. This isn't an elective. This is a disease. RESOLVE's Advocacy Day is May 11, and we're so close to 200 advocates".--Candace

"Millennials want to make a change. That's what they do. They get loud and they make change".-Angie

"Use your voice on the phone, with your e-mail, with your letters. Even if you can't make it [to advocacy day], you can still be really involved".--Fran

"[Advocacy Day]" is truly the most overwhelming and empowering day of your infertility journey to be able to take that moment of control".--Angie

"If you can't make it to DC, you can still support us. Take a look at or follow us on social media and we'll lead you in the right direction".--Candace


5 Hidden Patterns Uncovered Across the Top 25 Fertility Doctors in Patient Reviews

By Griffin Jones

What a world it is where patients can form an opinion about their fertility doctor before they even schedule an appointment. A 2013 study shows that 90% of respondents reported that online reviews influenced their purchase decisions. Through public feedback from their peers, people dealing with infertility have a plethora of information to make their decision from online review sites that exist for the benefit of the patient. Here's where it gets interesting.  Fertility centers can also benefit from online reviews--good, bad, or neutral--by using them to deeply understand and adapt to patient habits. By carefully examining the online reputations of the most highly rated fertility specialists in the country, we have further decoded the messages that patients are sending loud and clear.

We know from initial research that the success of an individual's treatments using Assisted Reproductive Technology (ART) greatly influences how they write their review of their fertility clinic. Positive fertility clinic reviews are three and a half times more likely to mention a baby or pregnancy than to mention lack of success or make no mention at all. Equally, negative reviews are three times more likely to reference leaving the practice before success than to mention a baby or to make no mention at all. We also know that positive fertility center reviews outnumber negative reviews by more than 2 to 1. Getting some ideas from Joseph Davis, DO of RMA of New York, we wanted to dig beyond these observations to try to answer more questions: 

  1. Do the same patterns apply to fertility doctors with almost no negative reviews?
  2. Does an REI's rating correspond to his or her practice's success rates?
  3. Do the clinics with the highest success rates have high online ratings?
  4. What is the correlation between an REI's gender and his or her online reputation?
  5. Are younger docs rated more highly than their veteran colleagues? 

Limits to the data

First,  several review sites are popular for rating fertility doctors, and they are not uniform. Some sites, like Healthgrades, offer only star ratings without qualitative responses. Other sites likes Fertility Authority, Vitals, Google, and Zocdoc have the option to leave star ratings with or without comments. Yelp and RateMDs include qualitative responses with their reviews. Yelp tends to be more deeply populated by place (practice) reviews as opposed to reviews for individual doctors. In the latest phase of this research project analyzing fertility doctor reviews, I chose to use RateMDs because it is the easiest platform to search by sub-specialty.

There are 2,264 reproductive endocrinologists listed on RateMDs, mostly from the United States and Canada. We can search them by both highest-rated overall and per metropolitan area. Still, RateMDs isn't a perfect source. There are many duplicate profiles and only 1,205 (53%) of the physician profiles have any reviews at all. Furthermore, the rate of adoption for every review site varies widely by market. On RateMDs for example, there are 929 reviews of reproductive endocrinologists in Toronto, but in a very similarly-sized market, Houston, there are only 380. Lastly, you may be listed as an OBGYN, and not as an REI (or both in the case of duplicate listings). With that said, when we check someone's RateMDs rating (if they have ten or more reviews) against reviews on other platforms, we find they are consistent. 

I'm really excited by a newer review site that Dr. Dan Nayot brought to my attention, called Fertility IQ. You may have thought it was my site if I sent you the link to your listing. It isn't. Though I sometimes wish it was, because much of the data that I aggregate manually, they will soon be able to export with the click of a button. Most doctors don't yet have enough reviews for meaningful comparison, but I see this site becoming very popular over the next six to twenty-four months. The user experience (UX) for patients is outstanding and the site validates patient authenticity. Both the qualitative and quantitative questions are more in-depth than any other channel. Above all, there is a market need for a uniform, clean, and extensive platform to compare fertility doctors and clinics, and I hope this is it. In the meantime, I manually scour reviews for data like a cyber caveman.

Fertility IQ's home page

Fertility IQ's home page

Of course, there are limits to ranking clinics by IVF success rates as well. Partly because the Society for Assisted Reproductive Technology (SART) appeals that success rates not be used to compare clinics. Consequently, they don't rank them in a spreadsheet that we can easily pull. So we use the site, While Fertility Success Rates makes it easy to check the top 25 clinics in the United States, some clinics are missing from the site's overall listings, even though their data can be found in the annual CDC report. Despite the limits in our data, we continue to notice some interesting patterns. 

1). Do the same patterns apply to doctors with almost no negative reviews?

Yes...and no. I analyzed the first ten reviews of each of the top 25 rated reproductive endocrinologists. Of the 250 reviews

  • 164 explicitly referenced a baby or pregnancy
  • 70 contained neither a reference to a baby or pregnancy nor mention of lack of success
  • 1 mentioned a lack of IVF success
  • 10 described that they were still in treatment
  • 3 referenced treatment other than ART
  • 2 were negative reviews
Top 25 fertility doctor reviews mention pregnancy

So these doctors were actually even more likely to have their reviewers mention a baby or pregnancy than their colleagues at large, 66% compared with 60%. What's interesting is that their reviewers were also almost twice as likely to make no mention at all, 28% to 16%. The difference came from those who described still undergoing treatment; 14% for all positive fertility clinic reviews and only 4% for these top 25. Only 1% of these reviews were negative or explicitly referenced a lack of success in treatment. What could be the reason? We know these doctors don't enjoy IVF success rates of 99%. Let's come back to this after we investigate how clinical success rates impact online reputation.

2). Does an REI's rating correspond to his or her practice's success rates?

No. Watch as we take the top 25 ranked reproductive endocrinologists on RateMDs. Then we check them against the top 25 clinics from the 2013 SART reports. Do you have any guesses of how many doctors appeared in both spreadsheets?

Randle Corfman, MD of the Midwest Center for Reproductive Health was the only one. In other words, while success of ART treatment largely predicts how someone will leave a review, success rates do not directly correlate to a physician's online reputation. 

These are the highest rated reproductive endocrinologists on 

These are the highest rated reproductive endocrinologists on 

3). Do practices with higher success rates have higher online ratings?

Not by much. It should be stated that practice ratings can be even more difficult to garner than individual physician ratings. For those in the top 25 in success rates, I used the review site that offered the most ratings per clinic. If there were less than ten responses for a clinic on any one review site, I left their rating blank. In a rating scale of one to five, the ratings of 19 of the top 25 clinics in success rates ranged from 2 to 4.5. The mean rating was 3.7 and the median was 3.5. The median for fertility centers at large lies between 3 and 3.5. 

Top 25 U.S. fertility clinics by 2013 success rates

Top 25 U.S. fertility clinics by 2013 success rates

4). What is the correlation between the gender of the REI and his or her online rating?

The correlation (or lack thereof) of a physician's gender to fertility doctor reviews will be interesting to further explore.

  • Do patients have higher standards of judgement for one gender?
  • Does each gender tend to employ different communication styles that are more or less effective?
  • Do patient biases cause a message to be received differently from one gender than another?

This is what the current data show us:

  • Of the top 50 rated REIs on RateMDs, 22% are women and 78% are men.
  • Of the bottom 50 (of those with a minimum of ten reviews), exactly 50% are men and 50% are women. 
Top 50 rated fertility doctors in US
*Of those with ten reviews or more

*Of those with ten reviews or more

To try to offer some context, Valerie Baker, MD, President of the Society for Reproductive Endocrinology and Infertility (SREI), references a recent REI workforce study published by Fertility and Sterility. 38% of the respondents were female and 61% were male. 

5). What is the correlation between ratings and years in practice?

I often hear people say that new physicians coming out of residency and fellowship are more savvy of their online reputations than are veterans in the field. I don't know that we have a sufficient way of being able to validate or disprove this inference at this time. We would have to know the year that every REI completed her or his fellowship and their ages; data that isn't easy to find. I can only offer some marketing insight.

I see at least three doctors in the top 25 who I know are under age 40. Two of them are the top rated fertility doctors in metro areas of larger than six million people. Newer doctors can leverage a high online rating to negotiate a partnership plan with a recruiting practice because they can build their online reputation and social media loyalty to become the highest rated fertility doctor in their area before they even complete their fellowship. Conversely, recruiting clinics can look at a physician's online rating and social media presence to make more educated personnel decisions. 

Decoding the bigger picture

What lessons are we left with? No clinic and no physician can boast IVF success rates of 99% or anywhere close to it. Yet we count at least a few dozen doctors whose negative reviews are less than 1% of their online reputation. When we look even closer, we see that while success of individual ART treatments influences patient reviews, clinics' success rates don't necessarily predict their online ratings.

This shows us that we are not destined to have a third of our patients report dissatisfaction. As success rates majorly improve across the field, we see that patients still expect more from their care experience than just clinical treatment. Patients who haven't found success through ART may not leave rave reviews or promote their practice on social media and we can appreciate that. Still, if we can deliver to them a better experience than they ever would have had without us, they may not feel as though their only recourse is to express their disappointment online. Analyzing how fertility clinic ratings relate to ART success rates helps us understand exactly to what patients hold their fertility centers accountable.


All In This Together: 4 Ways Practices and Patients Are Uniting Around Infertility Awareness Week

By Griffin Jones

If I asked you to name what comes between September and November, you might answer Breast Cancer Awareness Month (BCAM) before you say October. Is there any oncology center in America that doesn't participate in breast cancer awareness month? Is there anyone who doesn't recognize those pink ribbons? Over 1.5 million people participate in the Susan G. Komen races alone. With major partners like the NFL and Proctor and Gamble, the month is almost too popular; to the point where criticism is made that brands exploit the cause for their own profitability. Meanwhile, all the infertility community wants is recognition of their disease and the resources to treat it.  Yet of course BCAM is so much more widely known than National Infertility Awareness Week (NIAW). After all, statistics show that 12% of all U.S. women will develop breast cancer in their lifetime. That's dramatically higher than the 11.9% of women who receive infertility services within their lifetime. 


Infertility lacks a giant brand champion, like the National Football League

Infertility lacks a giant brand champion, like the National Football League

Breast cancer is a serious disease that causes horrible hardship on millions of families. It deserves every bit of attention that it receives. I hope 2016 is the year when the infertility community acts in solidarity for the same.

NIAW 2016 is quickly approaching, April 24-30 (May 12-20 in Canada), and clinics and patients have a vested interest in spreading awareness about infertility. The lack of infertility awareness is one big problem that compounds many others. Practices have time and priority constraints that sometimes keep them from being fully active in their promotion of the cause. Those struggling with infertility have priorities of their own, and for some, infertility may be too personal of an issue to discuss with others. I understand; no one can tell you that you should talk about infertility in an open setting. It's a personal decision and one only you can make. It's worth examining, however, how obscuring infertility from the public eye compounds the other issues that come with it.

1). Social PRESSURE

"When are you going to have a baby?"
"Don't you want kids?"
"You can have my kids."
"You can always adopt."
"Just relax and it will happen."

People ask these questions because they know very little about the infertility journey. Comments like these are what spurred Tyra Banks and Chrissy Teigen to inspire the #stopasking hashtag in the fall of 2015. I know how much this bothers you because I see the companionship that forms around the #ttc (trying to conceive) community every time this pain point comes up. Some of the most popular themes that I post to social media are the articles that talk about what not to say to someone with infertility.

One of the most popular infertility e-cards on Pinterest

One of the most popular infertility e-cards on Pinterest

Discussing your plans for children makes for easy conversation...for someone else. Most of your friends and acquaintances have no idea how common infertility is or how painful such otherwise ordinary questions can be. I would have had no idea if I didn't work in the infertility space. I'm sure I would have made many of the same stupid comments, all with the best of intentions. If these conversations bring you great pain, it may be less painful to participate in the conversations that help educate people.

Social pressure may also be projected onto fertility clinics and their staff. When someone spends thousands of dollars on IVF, they are essentially paying you to solve their problem of infertility...problem...singular. Of course infertility actually becomes an amalgam of many problems. Because you are the one being paid to "solve the problem", by default, you can be assigned responsibility for all of them. By participating in the greater cause to address the social pressure that your patients face, you may be able to allay some of the pressure that you feel as well.

2). Financial BURDEN

At issue: far too many people think of infertility treatment as elective. Only 15 states mandate that insurances cover any kind of infertility treatment and of those, RESOLVE grades only five with an A.  Legislators and employers don't feel hurried to extend coverage because they don't perceive it as a great enough priority to their constituents or employees. If infertility was more widely talked about, and greater societal emphasis was given to its treatment, less cost would fall on you as a patient. It's a big deal when an insurance company tries to avoid paying for treatment of other diseases. If everyone you knew understood the severity of infertility, far more companies and states would mandate coverage for IVF and other services. Having to pay for IVF out of pocket is owed in no small part to a lack of knowledge about the disease.

States ranked by RESOLVE

States ranked by RESOLVE

Clinics, too, face financial limits when public understanding of infertility is poor. There are three reasons.

  1. Your "word-of-mouth" referral network is dramatically smaller than its full potential if your patients don't feel comfortable speaking about infertility. A patient cannot recommend you to someone who would really benefit from hearing about her experience if the conversation isn't welcome to take place. 
  2. People are sometimes terrified to see an infertility specialist, because they have insufficient information and a lack of assurance from confidants. Fear reduces the total number of people who should be coming to your office.
  3. Cost is the single greatest factor that prevents patients from proceeding with treatment for infertility. Dr. Tarun Jain of Chicago IVF finds that "in states where IVF coverage is mandated, about thee times as many people use IVF than in non-mandated states. It's about the same multiple seen in European countries which cover IVF." If infertility was enough of a public concern, your center could be doing three times the number of cycles that you  do now, and many of your patients wouldn't be overwhelmed with the stress of the cost.

3). Emotional STRESS

Many people going through infertility say they feel much better when they are able talk to others who can validate their feelings and experiences. "I am so happy to have found all of you" is a very common sentiment among the #ttccommunity on Instagram. Many more would love to connect with people who share their experience: they just don't know they exist. Not all support groups are equal and some types of support may be better fit for you than others. You may feel more comfortable face to face, or you might like an online setting with anonymity. Some may prefer not to connect with anyone at all, and that's perfectly fine, but everyone should be informed of their options. Most people struggling with infertility say that they found their support resources on their own. Neither peer support nor mental health professionals (MHP) can eliminate the burden of stress that accompanies infertility, but a lack of general attention to infertility lays an unnecessary barrier to emotional relief.

Photo from Good Housekeeping

Photo from Good Housekeeping

Emotional stress has even broader implications for practitioners than only their patients' mental health . According to a study by Courtney Lynch, PhD, MHP, of The Ohio State University School of Medicine, women with high stress levels had decreased odds of pregnancy of 29% compared to women with low levels. While there's no data to prove that greater emotional support will increase the likelihood of pregnancy, research from the University of Michigan Health System concludes that peer support helps reduce stress, isolation, and depression.

Equally, my research shows that only 2% of negative fertility center reviews mention a successful pregnancy or the birth of a baby. The contrapositive is true for positive fertility center reviews. What's interesting is that several dozen fertility doctors in the United States and Canada have very few negative reviews. We know that their success rates are not above 80%. For reasons not yet defined, patients feel they have other venues for venting their stress. Neither the clinic, nor the doctor, nor the nursing staff should be the focus of an individual's emotional stress, so it is in the practice's interest to empower patients to access other avenues of support if they so choose.

4). Medical Impact

A very common concern shared by reproductive endocrinology and infertility (REI) specialists is when a woman waits too long to be seen by a fertility doctor. Time can be a crucial factor in the process of fertility treatment and if a woman is reluctant to schedule an initial consultation, she may be equipped with less options later on. Melissa Campbell of the infertility awareness blog, Triumphs and Trials, shares that women dealing with infertility are often hesitant to see an REI because they are nervous that the doctor will pressure them into IVF.

"To me, it felt like a death wish," Campbell says. "I'm going to go [to a fertility clinic] and they're going to push me into IVF. I feel like I have to do everything possible before I even go see an RE"  

"We need to remove the perception that REI equals IVF," says Dr. Matt Retzloff of Fertility Center of San Antonio. "One of the trade-offs is, the longer we wait, the less tools we have in the tool chest to help out. We want to see you sooner. It gives us more options."

Is it a reach to say that clinics' success rates would improve if couples and individuals coping with infertility scheduled their first appointments earlier in life? Very generally, patients would have increased probabilities of having a baby if they were able to take advantage of more options and benefit from earlier detection. As a society, we can both receive and deliver better medical services if the public is more alert to the challenges of infertility.

Take action: #Startasking

It's time to team up. Practices, advocates, couples and individuals dealing with infertility, and their collective communities can act together to turn the tide to bolster understanding of infertility. This year, RESOLVE has laid the groundwork for a very powerful social media campaign. Instead of a theme that demands that people stop asking, the #startasking initiative addresses social stigma head-on, by encouraging people to learn more about infertility, its implications, and options for treatment. Working together, and taking advantage of the tremendous power of digital media, here are four ways to make National Infertility Awareness Week 2016 the most successful yet.

1). Snap those selfies
 People love to see their fertility doctors and nurses through social media. People love seeing IVF babies. People still struggling with infertility love to see their supporters from the #ttccommunity. Download the official NIAW selfie sign which includes a #startasking bubble to write in your #startasking topic. Here's the easiest way to approach the topics you'll pick for your #startasking questions. 

  • For clinics: What are the five most common misconceptions that your new patients have about infertility and treatment? These usually tie into patients' greatest fears. For example, if you find that your patients are reluctant to schedule an initial consultation because they are afraid that they will be pressured into using IVF, your post might be, "#startasking us about options other than IVF".
  • For people with infertility: This is your chance. You get to control the conversation for once. Instead of holding back tears because someone else took your conversation in the direction of when you will have kids, this is your opportunity to decide what you want people to know about your journey. 

2). Ask with video
Instagram video allows for fifteen seconds and there's no such limit on Facebook. For no cost, use your smartphone to record your video questions and post them on your own channels and those of others. Practices can both pose and answer general questions to and from their communities. People dealing with infertility can record their questions and answers and share them with both the #infertilitycommunity and their clinics.

3). Share each other's content
I normally don't recommend that clinics spend too much time on Twitter, but if you have a Twitter account, this is the time when it makes sense to post and share other groups' content using the #startasking and #niaw hasthtags. Share RESOLVE's posts on Facebook and Twitter. The #ttccommunity is very good at sharing content, even on Instagram where there is no native reposting function. Sharing one another's posts about #NIAW is a tremendous way to increase the visibility of the community.

4). Tag each other
I know I needn't say more, #ttccommunity. You are the best at tagging one another and bringing each other into the conversation. I hope that #startasking and #niaw make for a very meaningful dialogue for all of you. While fertility centers can't tag patients without the proper authorization, we can tag @resolveorg and other support resources, and even tag other clinics. Yes, competing fertility centers can collaborate on content distribution. Competitors joining forces for a specific cause is often very well-received, like when the three major news networks came together for the fight against cancer.  Patients find it reassuring and media outlets pay greater attention.

Push for The Turning Point

Nearly every problem we face in the infertility space is compounded when awareness about infertility is low. You face unfair social pressure and financial stress because not enough people are conscious about the devastation caused by infertility. Medical treatment is denied to hundreds of thousands of people every year. Other medical conditions have found tremendous recognition through their awareness efforts and the infertility world has an opportunity to unite in a way that benefits everyone and gains the acknowledgment it deserves. RESOLVE President and CEO, Barbara Collura, encourages "the entire infertility community to call attention to this disease. By asking the tough questions about infertility, we not only have an opportunity to raise awareness about this disease, but also to motivate all who are touched by infertility to commit to the cause.”

At the very least, National Infertility Awareness Week 2016 is an opportunity to gain more exposure for your practice and more understanding for your fight as a patient. As a specific time-frame with a specific goal, it is easy for the media and public to understand and support. More ambitiously, it could be a turning point in this long, exhausting struggle of an issue that people know so little about, or worse, doubt its seriousness. You don't have to hope that a major network reporter will pick up your press release and decide to cover infertility awareness week. We have the power to call attention to the cause with the content that we create. Our own social media efforts give us the distribution to reach beyond our immediate communities. Our creativity will determine how far it will go. Patients, practices, and advocates are coming together to benefit the entire field. 


5 Essential Questions Your Fertility Clinic Needs to Answer at Your First Appointment

By Griffin Jones

"They treat this place like a baby factory. Doctors spend so little time with patients."

Factory. This is a word we hear very frequently when people are unhappy with their fertility centers. Do you feel like your fertility clinic is a factory? Do you see your doctor as much as you expected you would? Are your phone calls promptly returned? Do the staff remember your name? Now, some of these issues matter more to certain people than they do to others. Some people are perfectly happy with a "baby factory", provided that the factory produces a healthy baby. Some are really only concerned with the final result and less so with the process that leads to it. From a small group of patients I surveyed, slightly more than half would have preferred a doctor with an atrocious bedside manor but with exceptionally high success rates. The other half preferred  a personable, compassionate doctor whose success rates were well within the standard of care. Surveys conducted by Dr. Francisco Arredondo of RMA of Texas conclude the same. There is no right or wrong decision, so long as you are perfectly aware of the decision you're making.

IVF clinic as a baby factory

A baby factory may be exactly what you want. After all, the reason you're parting with ten, fifteen, or twenty thousand dollars of your own money is for the end-result. I recently spoke with someone who had all but decided on a very large clinic in her area. She wasn't thrilled with the group, but she understood the decision she was making. She was disappointed with the bedside manor of the staff, but as the largest fertility practice group in her area, she felt their labs were the absolute best. To me, her decision is sound. Like any personal decision, no one can judge it right or wrong as long as your objective is clear, you are aware of the pros and cons, and you fully accept the cons and risks in pursuit of your objective.

There's never a guarantee

I feel compelled to mention this because so many people have told me they were unaware that there is never a 100% probability of success for IVF. Some fertility groups have been blamed for leading you to think otherwise, but in many cases, the probability of not having a baby is higher than that of having one. The Society for Assisted Reproductive Medicine (SART) reports that the national average of IVF cycles resulting in live births for women under age 35, was forty percent in 2013. That percentage decreases with each successive age group. SART says that their data shouldn't be used to compare centers, but the site, Fertility Success Rates, uses SART data to demonstrate that the top clinic in the country has more than double the success rate of the national average. Extremely impressive, and still nearly a one in five chance that the cycle will not be successful. You have a right to know that. You're dealing with calculated probabilities and not certainty. It's your finances and your emotional energy. Everyone's personal condition is different, and your reproductive endocrinologist (RE) will be able to give you a better idea of your own probability of success. For some, a 5% chance of success might be worth the try; it completely depends on the personal needs of you and your partner. To inform your decision, here are five questions for your first appointment. 

1). How much time will you spend with your fertility doctor?

"You hardly ever see your actual doctor," is a very common complaint about larger fertility practice groups. Still, I read this criticism almost as frequently among smaller practices. Ask your clinic

  • Who will you be communicating with the majority of the time? 
    • The doctor?
    • The nurse?
    • The IVF coordinator?

It might be perfectly fine to spend most of your interactions with the IVF coordinator, but if you had been hoping to speak with your doctor, you should be prepared for that. REs are very busy people. None of them have an abundance of unallocated time. If I could invent something to sell to doctors, it would be any solution that somehow gave them back some of their time. Everyone wants your fertility doctor's time. You want it, because you want your concerns to be directly addressed. Their staff want it for guidance. I want it so I can move forward with their approval. Their families want it because REs are human beings too. Some may have more time to give you, and quite frankly, you've earned that time. Decide how important individual time with your physician is to you and ask how much of it you can expect.

2). How will your fertility practice communicate with you?

I help fertility centers manage their Facebook pages and Instagram accounts. Often, I see people using these channels to ask their clinics about their treatment protocol. The office can't answer these questions on social media because of privacy concerns. Still, it's clear that you might prefer speedy, electronic communication. Do you want to send an e-mail to your IVF coordinator or do you expect to be able to talk with your doctor over the phone? Some clinics use patient portals to communicate with their patients. You see many clinics with the eIVF logo on their website, for example. You can use the eIVF portal to communicate with your care team in a way that is convenient and concise. Patient portals like eIVF can be of great benefit to you when you want individual answers or easily accessible information. Just remember, the power of any tool depends on the person using it. How prompt/clear is your team is with their responses? 

3). When can you expect a response?

Lack of communication is one of the top complaints about fertility clinics.

  • "Barely return your phone calls/no communication",
  • "The IVF coordinator almost never returns my calls,"
  • "Bottom line--there was no sense of communication here".
Get to know your fertility doctor

These quotes come directly from negative fertility clinic reviews. You might be leaving a message on your practice's Facebook page because no one at the office returned your phone call. You will have a lot of questions during treatment. You might even pose your questions to the #infertility community on Instagram. It makes sense to hear from people who have went through similar experiences, but many times, people ask the #ttccommunity because they either haven't heard back from their doctor, or they don't feel like waiting for a response. Peer opinion can be helpful under certain circumstances, but you won't find specific medical advice on social media.

In general, communication is one of the greatest problem areas in all of healthcare. Fertility treatment is not exempt. Dr.  Arredondo recommends that physicians give patients a time frame that the doctor can realistically meet. This way, you will be pleased when your doctor gets back to you earlier than they said they would. It's clear that not all care teams do this, so you have to be your own advocate. Politely inform your practice upfront that prompt responses are very important to you, and you would like to know how long you should expect to wait for an answer.

4). How long did you have to wait?

I try to cut docs some slack here. Their time is constrained to the max and their attention is pulled in every direction. That doesn't make your time any less valuable, however, and some doctors seem to be inexcusably late. We can't hold REs to an unfair standard; we rarely if ever see our doctors at the very time of the appointment and this has been true since pediatric care. What you're really looking for here is how your doctor handles being late. Does he offer any explanation? If your doctor is late to your appointment because she spent a few extra minutes with a patient who really needed it, and she extends the same courtesy to you, I personally would accept that. If your doctor is forty-five minutes late in meeting with you and then rushes away without addressing all of your concerns, this office may be accepting too many new patients for their physician capacity.

5).where's the love?

High IVF success rates and wonderful bedside manner are not mutually exclusive. You may be able to find an extremely compassionate doctor and staff with outstanding success rates. On the other hand, you may find yourself in a situation where you have to prioritize one over the other. You can usually get an idea for for a staff's compassion from their online reviews. Some REs have mixed reviews and that can be very confusing. How can one person say a doctor is "very knowledgeable, compassionate and extremely kind" while another says "he doesn’t listen, interrupts and is very arrogant".  

My research on fertility clinic reviews suggests that positive reviews are three and a half time more likely to mention a baby or pregnancy than to make no mention at all. Equally, negative reviews are three times more likely to reference a lack of success than to make no mention at all. Nevertheless, there are REs with dozens of positive reviews and very few if any negative reviews. I have worked with some extremely compassionate REs and I will tell you, I rarely if ever read an ill word about them. Even in negative reviews if someone is dissatisfied with other staff members or billing, the reviews often start out "Dr. _____ is amazing, but...". These doctors don't boast IVF success rates of 100%, but they are better at setting the stage of your overall experience with communication and compassion. You will be able to tell from your first appointment if your doc falls into this category. 

you don't have to know it all

You don't know the answers to all of these questions yet; that's perfectly normal. How would you know what you prefer in your treatment relationship before you go through it? Don't fret if you don't have the answers. We don't know exactly what we want until we actually live the experience. No clinic has IVF success rates of 100% so there are other aspects to consider regarding the overall experience they provide. Understand that an initial consultation is not a commitment to treatment. Use that to your advantage. You shouldn't feel like you have to give someone $20,000 just because you already paid them $200 or $300. You are free to decide to go elsewhere if you really aren't comfortable after your first appointment. You are spending massive amounts of your money, emotional energy, and time. You are entitled to leverage them for the best possible experience for you. Consider what factors are most important to you when you go into your first appointment, and only move forward if the clinic has earned your selection...on your terms. 



6 Ways Savvy Fertility Clinics Are Preparing to Take IVF Cycles From You in the Next Recession

By Griffin Jones

"Then the Grasshopper is best to prepare for the days of necessity."

Generally speaking,the last few years have been very good for fertility clinics. We seem to be in a time of abundance. So I write this article now, to reference when the time comes. A mediocre patient experience or sub-par marketing presence may suffice for the moment, but now would be the time to  begin improvements to avoid increased vulnerability during any potential drop in IVF cycles. 

In one of Aesop's fables, the ant toils all summer to be prepared for the winter, while the grasshopper does nothing to prepare for leaner times

In one of Aesop's fables, the ant toils all summer to be prepared for the winter, while the grasshopper does nothing to prepare for leaner times

lean economic times expose the mediocre

David Kiley of Bloomberg Business argues that "weak brands" are exposed during a recession. During the Great Recession of 2009,  brands like KB Toys, Circuit City, and Linens'n Things were forced to close their doors after decades in business. Stronger brands in their respective categories such as Toys "R" Us, Best Buy, and Bed, Bath and Beyond, offset the decline in the overall market with the gained market share of their vanquished competitors. Meanwhile, certain brands with low price points (Dollar Tree), easier points of sale (Amazon) and a unique customer experience (Apple) experienced accelerated growth though the weakest economy of their corporate existence.

Fertility treatment could be considered "recession-resistant" (I don't believe in such a thing as "recession proof"). There has never been a decline in the number of IVF cycles performed in the U.S. over the last decade. According to SART data, the slowest growth in IVF cycles overt the last fifteen years was in 2009, with still more than 1,400 cycles than the year before. Post recession growth has resumed to 8,000-10,000 year-to-year increases. Still, many clinics throughout the country reported a sharp decline during 2009 and 2010. I have spoken with others in the southern United States and in western Canada who have been effected by regional recessions caused by the decline in the price of oil. 

hope for the best, prepare for the worst

I don't own a crystal ball. I can't say when the next economic downturn will come nor how strong it will be, and I am wary of those who tell us they can. We've heard for some time that the market will implode or the value of the US dollar will fall to zero. We're still waiting. Nonetheless, it would be reckless to assume that another sharp decline in the global economy will never affect fertility practices. It would be equally irresponsible to take for granted that IVF cycles will increase forever, even though current medical and social trends don't show any sign that they will decrease in the near future.

 I will be eager to capitalize on the opportunities that present themselves. I am not concerned about an economic downturn.  I prepare so that I don't have to be concerned. Neither should you be worried about the future of your practice. The point is not that you fret over potential upswings or drops in the market. The point is that you focus on providing a unique patient experience and leverage it to win market share from competing fertility centers.

Winning share of IVF cycles is the best hedge against a downturn

According to Fast Company, "market share is the most important metric because it is a relative measurement against external benchmarks." In other words, increased market share is your buffer heading into a recession. If the total number of IVF cycles decrease in a given area, you can mitigate the decline with an increase in the share of IVF cycles that your clinic performs. Rather than scramble to grow market share at the onset of a recession, we can begin to take measures now that will blunt the losses we might have otherwise incurred. We may even be able to use a weak economy as an opportunity for growth. Research from the Harvard Business Review shows that 9% of companies emerged from the Great Recession, performing better on key financial parameters than they had before, due to a combination of strategic cuts and investments in marketing and new assets. These are six measures fertility centers can take to win market share and prepare for a recession:

  1. Pay attention to other fertility centers' reviews to inform your competitive analysis. Monitoring sites like RateMDs, Yelp, Vitals, Facebook, ZocDoc, and Fertility Authority, allows you to see what patients like and dislike about other fertility specialists in your area, so you can assess your competitive strengths and weaknesses. Read all of the reviews that you can find of every fertility doctor/clinic in your area including your own. Example: you read several complaints that another reproductive endocrinologist (RE) was very inaccessible, while your reviewers laud you for the time you spend with your patients. Your "time with patient" is a competitive strength. If other practices have very few complaints about billing, but almost all of your negative reviews involve your billing office, your billing process is a competitive disadvantage that has to be corrected.
  2. Track all of your marketing efforts. In a recent blog post, I talk about the importance of closely monitoring key performance indicators (KPI) at your practice. You can't nurture relationships with your top five referring OBs if you don't know who they are. You can't cut the expenses of your three least effective marketing ventures if you don't quantify what results they produce. Start tracking your marketing effectiveness now so that you have a finely tuned system in place when going into an economic slow down.
  3. Expand your "word of mouth" referral system by over 600% with social media. Most fertility practices I have spoken to put their "word of mouth" referrals and those who report having found the practice through the internet at a combined fifty percent of new patients. Internet and word of mouth aren't entirely distinguishable from one another, due to the prevalence of social media. Data from Statista shows that on Facebook alone, your patients have an average of 360 friends. Meanwhile, according to the Social Brain Hypothesis, on average, people have a social circle of fifty friends and fifteen in whom they "can confide in about most things". So if you don't effectively leverage social media, you forfeit sixty to ninety six percent of the word of mouth social network that would otherwise be at your disposal. Use social media as both outbound distribution of patient recommendations and a source of inbound feedback to continually monitor the patient experience. Amplify your word of mouth referral network as much as you can by engaging your community on social media.
  4. Strengthen your MD referral relationships. Word of mouth is king. Internet presence is paramount. Still, referrals from OB offices play a hugely important role in new patient acquisition. Most clinics report half of their new patients coming from referring MD offices. One practice in the southern United States increased OB referrals from less than 40% of all new patient visits to 60%, citing physician lunches "as their single biggest marketing return by far". Your REs are extremely busy; taking them to an OB's office for an informational lunch might seem like an inefficient use of time, but with relationships with referring doctors yielding such high returns, it's wise to nurture these relationships before you need them the most.
  5. Test other markets. If you live in a more sparsely populated area, it may be that no amount of marketing or exceptional patient experience will yield you enough new patients. There are various ways for fertility centers to enter new markets. First, you can check Google Analytics to see if people are looking at your fertility center from other markets. If you live in an area with a low cost of living index, within a short flight of an area with a much higher cost of living, it could be that your IVF pricing is much more affordable than clinics in that area. Further data from the Harvard Business Review supports that drawing patients from remote markets is a way of increasing your market "headroom". If pricing is equal, and you can't find other strong competitive advantages to why someone would come to you from out of town, your only option for growth may to be open an office in a new market. 
  6. Increase your role in support. Connecting people to support is part of the patient care experience. As part of the standard of care, people should be informed of resources for both professional and peer support. Support groups, by default, then become referral networks. Like online reputation and social media, this is why effective marketing inherently depends on outstanding patient attention. Patients use their support groups to solicit and make recommendations of fertility centers. By supporting organizations like RESOLVE, and Fertility Matters, and informing patients of other support resources online and in their area, you give patients the confidence to recommend you to others in their support networks.

Organize, don't agonize

There's no way to be certain if the next recession will come in twenty days or twenty years. We don't want to worry about how we will operate during a recession, we want to operate in a way so we don't have to worry. If the trend in IVF cycles ever stops its nationwide increase, you will be well-served from having won market share from other clinics. Gaining market share is the greatest hedge against an economic downturn because it mitigates the overall decrease in IVF cycles. We can increase market share by expanding our "word of mouth" systems, nurturing referral relationships, empowering support networks, testing new markets, and tracking everything we do to bring in new patients. By preparing for a downturn in IVF cycles while conditions are strong, your fertility center will be well poised to flourish and grow.

win share of ivf cycles from other clinics to hedge against a downturn! download my absolutely free e-book "Digital Marketing for fertility centers: how to use digital media to acquire new ivf patients in 2016".





10 Infertility Support Ideas from a Conversation That Never Would Have Happened 10 Years Ago

By Griffin Jones

"We're all working together. That's the secret." --Sam Walton

On one hand, I absolutely hate millennial business buzzwords, and on the other, I deliberately use them often. I choose to say "silo busting" because of how important it is for different "departments" to be familiar with each other's goals and challenges. "Silos" aren't just separate departments within companies, they can be any sub-category of any group.  According to social scientist, Tom Wolff, PhD, of the University of Kansas, all community stakeholders have to be engaged in order to solve common problems facing the community. In the infertility community, our many roles account for many different stakeholders.  We have embryologists (scientists), reproductive endocrinologists (doctors), nurses, business managers, patients, support groups, mental health professionals, and advocates (among others). 

Bringing ideas together

Bringing ideas together

Physicians need to focus on the clinical treatment of hundreds of patients. Embryologists have to worry about the conditions of the lab and of the gametes. Patients are managing their personal aspirations, medical concerns, relationships, and financial status at once.  Business managers have goals for new patient consults and IVF cycles. With such demanding tasks, it's easy for all members of the team to lose sight of the complete patient experience, and it's easy for patients not to understand why. 

According to the Harvard Business Review, "customer-centric companies live by a set of values that put the customer front and center, and they reinforce those values through cultural elements, power structures, metrics, and incentives that reward customer-focused, solutions-oriented behavior".  In other words, we need feedback from every stakeholder in the community to collectively agree upon mutual goals. How the heck do we that? We can start by talking to one the same time.

New technology=new opportunities

Just two decades ago, we  had very few opportunities to bring together people from different ends of the fertility space for public conversation. Today, new media allows us to bring together experts and advocates from nearly every part of the world.  Blab is a relatively new social media platform that is still in Beta (product and market testing). Who knows if it will skyrocket in growth like Snapchat or fizzle away like Foursquare, but the forum gives us something we are all hungry for: the ability to openly meet around a topic with public dialogue. Think Twitter meets Google Hangouts. Blab is a way, for up to four people with webcams, to have a conversation that is open to the public to comment on and ask questions in real time. Last year, when I first learned about Blab, I immediately thought about its potential benefit the infertility space. We don't have too many opportunities to bring together doctors, patients, and support advocates in a public setting. I wanted to do exactly that.


We know from psychological research that infertility causes as much stress and anxiety as a cancer diagnosis. Yet we frequently hear from patients that they found out above their infertility support group on their own.  We  also observe from fertility clinic reviews, that patients are three times more likely to leave a negative review if their fertility treatment did not result in a pregnancy. So if the practice is only concerned with the clinical outcome of treatment, the public reputation of the clinic will suffer accordingly. Informing patients of support resources has an emotional benefit to the patient, a professional benefit to the physician, and a business benefit to the practice. According to a 2013 survey by Dimensional Research, 90% of customers report that their buying decisions are influenced by online reviews. If we want patients to be as satisfied with their experience as possible, we need to know what support resources exist, and how to direct the patient to them, if they so choose. In order to do that, we need representation from everyone involved.

Who's responsible for what?

In January 2016, I hosted a Blab with

  • Dr. Matt Retzloff, Reproductive Endocrinology and Infertility (REI) physician at Fertility Center of San Antonio
  • Rebecca Flick, Vice President, Communications, at RESOLVE, the National Infertility Association
  • Melissa Campbell, Infertility blogger and support advocate from the website, Triumphs and Trials

From four different perspectives and one half-hour conversation, we were able to extract at least ten different observations that are important for practices, patients, and support groups to know:

  1. People are often reluctant to see an REI because they are afraid that IVF will be pushed on them. REI practices may want to inform local OBGYN offices of infertility support groups in their area, because some patients seek peer opinion before they seek professional opinion. Equipping OBGYN practices with support contact deepens the relationship with the referring office and provides another step in which patients may become comfortable to seeing an REI. 
  2. "Writing a prescription for RESOLVE" is one way for patients to leave their first consult with information on support. It also ensures that talking about support resources becomes part of the standard of care.
  3. RESOLVE flyers on local support group information belong in folders that go home with all new patients. When a new support group forms in your area, RESOLVE will e-mail you a flyer with the group meeting details and contact information. This info may also be found through RESOLVE's zip code search
  4. Go through RESOLVE training: For areas where support groups don't exist, interested patients can go through RESOLVE training online.
  5. Instagram is home to one of the most vibrant online infertility support communities. People dealing with infertility sometimes send each other care packages and cards to the communities they form online. This free resource, for you to give to patients about infertility blogs and podcasts, came largely from suggestions on Instagram. 
  6. Social media can be great for peer support, but professional input is limited because of HIPAA regulations. For medical advice, patients should always contact a physician.
  7. Staff may need training on responding to and distributing information on requests for support. Unfortunately this is not the first time I've heard of someone wanting to leave support information with their doctor's office and not receive a response.
  8. Remove the perception that REI=IVF. All options are only available when the patient comes to see the REI. More content on when IVF may not be necessary, could help patients make their decision to schedule an initial consultation sooner than later.
  9. Patients should do additional research on support resources: The practice can give the patient an excellent start on infertility support information, and they will be able to find out what is best for their individual needs with some investigation.
  10. Training/education on support may be beneficial for REI fellows. At issue, too many people are not receiving emotional and social support for their infertility despite receiving clinical treatment for their condition. By setting a training standard for REI fellows, we could incorporate support into the standard of care. 

we're just getting started

One conversation won't cover all of the issues we have in the infertility space. Still, twenty years ago, we didn't have the opportunity to bring people together to consider various perspectives on a common issue. With emerging digital media, we have the opportunity to remove barriers that don't need to exist anymore. We have a chance to learn from each other so that we can all benefit from the improved patient-practice relationship. Using new media like Blab can be the first step in building more and stronger relationships across different disciplines within the field of infertility.


Patient or Customer? Self-identity in the business of infertility

By Griffin Jones

Here we are...wrapping up 2015, largely on pause between the major holidays. I'm taking it easy too, so I'm using this blog post to spell out how I can be more helpful to the infertility community in the New Year. That started an honest reflection about how we see self-identities (patients, practices, doctors, me), and what that means about our responsibilities to each other.

Image courtesy of  Pixabay

Image courtesy of Pixabay

I don't work directly with patients--I'm building a marketing firm for fertility centers--but that means I serve patients by proxy. But in what capacity? I recently spoke with a good friend of mine, who has been my business mentor for the last five years. He asked me to start from the beginning: what was my goal? What was I really trying to accomplish?

"Your goal is to make sure that everyone who wants to have children is able to do that, right?"

"Uh, yeah." I stammered.

"Why the hesitation?" he pressed.

Yeah. Why the hesitation? I thought. I found the answer after only a second of reflection. I took a dose of my own medicine in self-awareness.

"No, that isn't my goal." I had to be honest with myself so that I can be honest with everyone else. Of course, I want everyone to realize their dream of having a child. I want everyone to find happiness and I wish there wasn't suffering in the world. But I can't say that it's my goal for everyone to have a child, because I can't directly provide that solution. I'm not a surgeon or a scientist. I don't know how to use science and technology to make someone's dream come true. I am a businessman and a natural-born moderator and I can help people get better terms out of the agreement they're entering into. I must sound like an alien. Practices usually talk about infertility in clinical terms. Patients often talk about infertility with respect to the tremendous social, emotional, and financial stress that it causes. Here I am, trying to translate two languages by adding a third. Still, I think it's hard for practices and patients to meet one another's expectations if we don't face reality.

The Elephant in the operating room

I'll say it if no one else will. Fertility treatment is a business.  Money is exchanged for a service. Whether the cost falls squarely upon you as the patient, on a government body, an employer, or an insurance provider, that service will always be expensive. This is state-of-the-art technology and science, mastered by one of the most rigorous training disciplines in modern medicine. I deeply respect that. I also deeply respect that someone (most of the time you) is putting forth a great deal of wealth for that value exchange. That's called business. I hope patients and providers feel at least slightly more comfortable thinking of it this way. You've entered into the transaction regardless. As a "patient-consumer" you are entitled to the most value you can get for what you are paying .

In 2014, I started creating content and resources for fertility practices to provide more value in their role in the relationship. In 2016, I want to do the same for patients so they can go into the interaction with more leverage. To extract more value for both patients and providers, we may need to allow each other to be more vulnerable with our identities. I'm not getting sappy, I'll explain. According to research professor, Brené Brown, Ph.D., we all have wanted and unwanted identities and our unwanted identifies dictate our behavior every day. Brown goes on to say that the perceptions we want to have and want to avoid are often unrealistic.

Why doctors don't like to think of their fertility practice as a business

With some 1,000* board certified reproductive endocrinologists (RE) in the United States and Canada, it would be naive to think that no one among them lets financial motivation influence their judgement. But I have met dozens of REs and I can tell you that generally speaking, their identity as a physician is of greater esteem to them than their identity as the owner of a business. I do not use the words "sales", "customers" or even "business" with them, because they do not use those words.  They operate their "practice" and they serve "patients". I want you to know this because the ideal of providing you with the best care is how they self-identify. It upsets them greatly to receive negative feedback from patients. They often tell me that it ruins their week or they lose sleep thinking about it.  

Even REs with mostly high ratings feel sad when they feel they let someone down.

Even REs with mostly high ratings feel sad when they feel they let someone down.

I think that doctors don't like to think in business terms partly because they want to protect you. They are your physician and their duty to you in that role is sacred. Apparently they're justified in their aversion to a business identity; fertility treatment as a business does not seem to carry a positive connotation among patients either.

Why patients don't like to think of their fertility practice as a business

If you've spent thousands of dollars on fertility treatment, then you may be far more likely to view it is as business. That's usually a bad thing. When patients feel dissatisfied with their experience, it is fairly common for their public reviews to say that the doctor was "only in it for the money".

It's worth mentioning that these reviews came from a place with one of the best public plans for infertility coverage in the world. 

It's worth mentioning that these reviews came from a place with one of the best public plans for infertility coverage in the world. 

You don't want to feel duped, pressured, or misled. You certainly don't want to be made to feel that your necessary medical treatment is a discretionary spend. From what I've observed, business roles are unwanted identities for both practitioners and patients. Brown argues that when we reduce people to their unwanted identities, we miss the opportunity to know their many strengths. We all have different parts of our identity. You may be a patient, a customer, a reproductive endocrinologist, a business owner or an entrepreneur, but none of those describe 100% of who you are. You are also a friend, a joker, a volunteer, a terrible cook, an amazing dancer, and a hardcore Adam Lambert fan. I don't mean to digress, but I've found that cutting people some slack helps you get the most out of relationships in business and in life.

So about getting the most of it...

While helping fertility practices provide more value to their patients, I haven't done much to teach patients how to extract or find that value. You can expect more of that from me this year. This is not an act of charity, by the way. Providing people with the most value that you possibly can is the best way to do business. The more satisfied you are as a patient, the more likely you are to recommend the practice to others. You are going to spend a great deal of money, time, and emotional energy on whichever fertility clinic you choose. You should be able to leverage that choice for:

1). Clear expectations

No one's IVF success rates are 100%. In fact, the national average of IVF success rates based on live birth per transfer of fresh embryos is less than 48% for women under age 35. That in and of itself is a mouthful. What does it all mean? Patients need help digesting all of this information (so do I), and I know the right people to ask.

Patients often cite lack of clarity around success rates as a problem.

Patients often cite lack of clarity around success rates as a problem.

2). Financial Preparation:

Patients really hate not knowing how much their treatment is going to cost them. Sometimes, patients will say that they felt deceived by their practice because the clinic wasn't up front about the cost of treatment. Occasionally, people report feeling that their practice deliberately manipulated them. How does an $8,000 IVF cycle end up as $15,000 in medical bills? I personally believe that most practices won't mislead you on purpose. Rather, I think they are terrified of giving you the wrong figure. Spoiler alert: insurance is a nightmare. In most cases, the range of coverage comes down to the individual plan. Without diligently investigating your plan, the billing office has no way of predicting what out of pocket expenses you will face.

Furthermore, medication and additional testing vary for each individual. It's understandable that practices can't quote an exact price for total treatment on their website. So how about an explanation of why, and a list of things to consider? I get the impression that some practices are reluctant to do this because they feel this gives other clinics an unfair advantage. If I tell you that an IVF cycle is $8,000, but through additional testing and meds, it could be as much as $18,000, you may choose another clinic who lists their IVF cycles at $8,500. I want to prepare patients for this confusion so that you don't have any unwanted surprises and so that clinics are rewarded for transparency.

3). Access to support

Your clinic should play a role in connecting you with professionals and peers for support. They should have support contact information ready for you before you even step into their practice (on their website). RESOLVE can help you find an infertility support group in the United States, and Fertility Matters can help you in Canada, but there are groups of all kinds and your fertility center should know everyone of them in your area.

4). More choice

I'm talking about what to look for in online reviews. Honestly, in the uncommon instances when I see a fertility doctor with 12 horrible reviews regarding very similar complaints, I wonder how a patient even ended up with him or her. I have looked at more fertility clinic reviews than anyone on the planet (says I). I will show you what to look for and hopefully save you some headaches. 

IT's the only way I know

You're experiencing one of the most difficult journeys of your entire life. Sometimes, I wish that I was an RE but I'm barely qualified to apply first aid to a paper cut. I wish I could offer better emotional support than just lending an ear. What I can help you do is use your leverage as a patient-consumer to get more value from your experience. I promise to spend more time on that in 2016.

Have you thought about fertility treatment in these terms before? Is there more you wish you knew?



The Truth Is Undefeated: A hard look at "questionable techniques" and the current state of fertility marketing

By Griffin Jones

You can tell I'm still relatively new to the fertility space. I don't appear in the top ten Google search results for "fertility marketing". I'm working on that, that's what brought me to check. I was both encouraged and discouraged by something else that did come up, however.

On the first page of Google search results for the term, "fertility marketing".

On the first page of Google search results for the term, "fertility marketing".

It's unfortunate for the field of reproductive medicine when our top search results for marketing include, "Many Fertility Clinics Use Questionable Marketing Techniques Online", a Jezebel reiteration of a Huffington Post article from three years ago. I would normally argue that we should avoid questionable marketing techniques by using only real patient testimonials and images. But authentic content does not fully address the issue of transparency in fertility marketing . The fundamental problem is that fertility clinics serve two different populations who sometimes overlap and who are sometimes at odds. Until we equally recognize both groups and the value of their experiences, I'm afraid we'll continue to have more problems. 

Flowers over figures

Both articles are sensational summaries of a report called Selling Art: An Empirical Assessment of Advertising on Fertility Clinics' Websites by Jim Hawkins, of the University of Houston Law Center. The report suggests that the content on fertility centers' websites may be misleading--using pictures of smiling babies and the words, "miracle" and "dream". The report offers criticism that these images and words may influence a prospective patient's decision instead of focusing on the Society for Advanced Reproductive Technology's (SART) published data on success rates. Such advertising may suggest that a pregnancy after IVF treatment is a certainty, when we know that in some cases, it's not even likely. 

It does seem that people sometimes feel misled. In a small survey I finished in April of 2015, patients told me that confusion about success rates was one of their greatest pain-points in selecting their fertility clinic. We also read in negative fertility doctor reviews that people sometimes feel rushed into IVF treatment. I recently spoke to a couple at Resolve's Night of Hope who felt the same way. It is certainly the case that some people feel that IVF is being sold to them. 

So why do I also find it encouraging that highly authoritative links to this report ranked so highly in the search results for "fertility marketing"? For the same reason I am building a company that will also rank among those results. I believe in a marketing strategy built on support and transparency. The report suggests that fertility clinic marketing should be more thoroughly regulated because of these questionable marketing tactics. My largest problem with that notion is that it shares a faulty belief with the lousy marketers that implement those tactics: obscurity works. Indeed, not being fully transparent may work in the short term. Some people clearly feel that they were persuaded with unrealistic expectations to pay for expensive IVF cycles. This strategy may have been tenable twenty years ago. Today's data, however, proves that people increasingly make decisions based on what they read in online reviews from their peers

You can run but you can't hide 

Fertility centers need to properly manage new patient expectations or their online ratings will suffer. Social proof in the form of online reviews should be the cornerstone of every good fertility clinic's marketing efforts. If any prospective patients or patient advocates read this post, I implore you to check the reviews of a provider before you decide on them. Investigate both the fertility practice and the reproductive endocrinologist (RE) on Yelp, Health Grades, Vitals, ZocDoc, RateMDs, Google reviews, or whichever of those are the most used in your area. Don't look at the star rating alone, but pay attention to the comments. If there are enough reviews, you will be able to get an idea of the culture of the practice or physician you are considering.

I don't know if fertility practices should be required to post their success rates, but I certainly think that they should post them. Patients are looking for that information and if they don't find it from you, it will be from a site like or from one of your competitors. Clinics should be transparent with success rate info and create content explaining the complex data to patients. 

Patients will find your success rates from one website or another.

Patients will find your success rates from one website or another.

Miracles happen and dreams are real 

I disagree that it would be appropriate to remove baby pictures and words like "dream" and "miracle" from your site.Those words belong to the patients themselves. If you look at the Facebook pages of nearly any fertility clinic in America, there is almost certainly a photo post from a happy patient that includes the word, "miracle". That child truly is a miracle for the parents that ventured that hard, lonely journey for so long. Their fertility specialist and their practice helped bring that miracle into existence. And for those couples and individuals that are struggling with infertility, it is their dream to have a baby of their own, a dream stronger than any other. We should speak to people in the language that they use, especially when it's based on results you've achieved. Your practice exists because people vividly dream of a miracle. Ideally, we should use baby pictures from actual patients. I think it's time to get the HIPAA release forms ready. The authentic account of someone who has actually realized their dream  is critical motivation for people under enormous emotional stress who are making a complicated medical decision. Sadly, however, we know that dream will not come true, in that form, for many people. So we must recognize the value of two communities rooted in the journey of infertility.

The word miracle belongs to the infertility community.

The word miracle belongs to the infertility community.

Serving two communities at the same time

I will oversimplify the infertility community for the sake of fundamentally understanding our responsibilities to them. As I see it, the infertility community is one population of people that becomes two. There are those who have ended their journey by achieving their dream of a biological child. In parallel, there are those who are still very much on their journey who may never realize that version of their dream. I hope this is the beginning of a much longer dialogue, because not recognizing the significance of both groups' feelings leads to many problems. We often hear complaints from patients without children when little ones are in the waiting room. Yet, we hear grievances from patients with children when they are asked not to have their child in the sitting area. For one group, Facebook and Instagram are places to celebrate their triumph over the darkest period of their lives. For the other group, they are in the midst of darkness and every pregnancy announcement on Facebook and every baby photo on Instagram is excruciatingly painful . Both communities have an inalienable right to the way they feel. These two communities overlap and we serve both of them. Because we're serving two communities, we have to be able to offer them a variety of benefits or some will never get value from their experience with us. I think fertility centers need to consider themselves agents of help beyond clinical treatment. Both groups need access to support; a peer support group member should never have to find out about her support group on her own. To better serve both populations, we need to

  • Send patients home with information on support groups in their area. RESOLVE facilitates infertility patient support groups in most mid-size to large U.S. metro areas and Fertility Matters is their peer in Canada. These are only two examples of support networks. There are patient advocacy groups and countless independent support groups throughout North America. I believe it's our responsibility to promote support groups when they ask for our help in distributing their information.
  • Empower people on social media. Whether it's on your fertility practice's Facebook page, or in a private forum, people coping with infertility use social media to connect with people who know their struggle. Promote RESOLVE Fertility Matters, and other groups online and share their groups if they ask you to. We don't not need to participate in these support forums (it may be better if we don't), but simply connect the people who are interested in them.
  • Give patients a list of popular infertility blogs and infertility podcasts so that they can interact with people who share their experience. 

Can you grow your practice by reconciling your results as a "miracle worker" with empirical expectation setting? I am building a business with my vote of confidence that it's the best way to do so.

Setting up for success

There are real life examples of the virtuous cycle I propose--attract new patients with the experience of delighted former patients, offer support and other resources, temper with very realistic expectations, and repeat. Dr. Ilan Tur-Kaspa is one of the highest rated REs in the Chicagoland area. I spoke with him about his approach. Dr. Tur-Kaspa says that the number of new patients that tell him they chose him because of his online ratings has increased. He credits a strong emphasis on properly managing expectations with the patient before treatment. "We talk a lot about the difference between disappointment and surprise," Tur-Kaspa says. "Whatever the probability of success is, it is important to communicate that in the terms of the probability of failure. i.e. if there is a 30% chance of success, we should communicate that there is a 70% chance that it won't work. The patient should preferably  acknowledge the odds of failure. Wait until they say 'I understand'".

When a patient looks at your online reviews on a site like ratemds (pictured), they are one click away from every other RE in your city. We want your reviews to be the best they can be.

When a patient looks at your online reviews on a site like ratemds (pictured), they are one click away from every other RE in your city. We want your reviews to be the best they can be.

I'm not a physician, so I certainly can't advise physicians on how to speak to their patients. Nor do I want to offer an incomplete solution, because I see that positivity is hugely important.  I'm simply a marketer who sees the impact that clear expectations have on the public image of the practice. Some marketers may ignore expectation setting for the sake of scheduling more IVF cycles in the short term. A good marketer will use the patient delight that comes from proper education as the pillar of their marketing strategy. For highly rated REs and fertility clinics, those reviews belong front and center on your website. A window to Yelp and Facebook  provide a balance to the testimonials that you've selected . It's okay for patients to see the occasional one-star review. Not every one will be satisfied 100% of the time. I believe that when we publicly acknowledge that, we begin to ensure that people are satisfied as much as possible.

The truth is undefeated (eventually)

We don't have to use "questionable marketing tactics" because they won't grow our practices over the long term. For those that embrace transparency and connection to support, market share will grow and marketing will be more effective and less expensive. We have to provide the best possible patient experience in order to build public social proof. That social proof, tempered with clear expectations and information, is the best way to attract new patients. In order to preserve this virtuous cycle, delighted patients bringing in more patients, we have to recognize the dynamics of both populations in the infertility community, and the equal worth of their experiences.