For Patients

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. 

Oh.

 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. 

 

How Much Does IVF Really Cost? Why No One Will Tell You The Plain, Ugly Truth

By Griffin Jones

How do people feel about the financial charges associated with IVF? I don't know, you tell me.

  • "Incompetent or possibly fraudulent insurance practices"
  • "Almost a year later I am still unable to officially take care of my billing issues"
  • "They have no problem with asking me for money but pointing out there was a descrepancy [sic] in billing no one would answer"

All of these comments come from real fertility clinic reviews. Is this frustration familiar to you? Financial stress is one of the biggest pain points in dealing with infertility and it sometimes negatively influences your relationship with your fertility clinic. As if infertility didn't already give you enough to deal with, its best medical solution is one of the most expensive endeavors you'll ever face. Some people talk about the cost of IVF in terms of financial infertility, because it is the most common obstacle that prevents couples and individuals from seeking treatment. We frequently see GoFundMe and other crowdfunding campaigns to raise money for IVF. In most U.S. states and Canadian provinces, the expense of IVF is paid out of pocket. Even in the United Kingdom, where the National Health System (NHS) covers most health expenses, there are still many people in the U.K. who don't qualify for the terms of coverage and they too have to pay from their own accounts.

Organizations like RESOLVE advocate for broader and deeper coverage of fertility treatment and you can join them for their 2016 infertility advocacy day on May 11.  Still, even in states like Massachusetts where insurance companies are mandated to offer IVF coverage, you find plenty of complaints about billing and unexpected charges.  At issue, there are many items you can be charged for because needs vary from patient to patient. It's not uncommon to see posts from people who say they've spent over $50,000 on costs associated with IVF. That's a wide leap from the IVF packages listed at $7,500. 

This variance poses a problem to you as you search for information to properly plan your budget. In the spring of 2015, I surveyed a small group of people dealing with infertility who listed cost confusion as one of their three most common pain-points in dealing with their clinics. You want a clear answer.  You want the transparency that you enjoy in almost every sector in which you spend your money. You instantly pay for everything else at fixed prices from Amazon, Priceline, Fandango, and Blue Apron. Why can't you get a straight answer about how much IVF will run you? You need to know what costs you'll incur and how much of it will be covered by insurance in order to budget for your treatment. Why aren't clinics more transparent with you? 

The answer is multi-faceted, so let's dig into it.

Hidden costs in IVF

proven fact: insurance is the devil

Let's start with one of the very few, axiomatic, incontrovertible laws of the universe: insurance is a nightmare. Remember the national debate we had about healthcare coverage just a few years ago? Effectively, the arguments centered around whose solution would make our horrible payer system even more horrible. The problem certainly isn't unique to fertility care; all of healthcare is plagued by the problem of cost uncertainty.  A study conducted by Consumer Reports shows that billing disputes are the third most common complaint Americans have about their doctors. Why can't a provider tell you how much a service will cost before you decide to go through with it? CEO of tech startup, PokitDok, Lisa Maki, says that people "are trapped by a system that requires that they agree to a service with no knowledge of what the outcome or what the consequences might be to them financially". It's a conundrum. Put yourself in the position of the billing manager; they hate it just as much as you do.

does insurance even cover ivf?

Glad you asked. Every U.S. state and Canadian province is different. In the United States, some states have mandated coverage. If you don't know the universal definition of mandated coverage for infertility...it's because there isn't one. It's helpful that RESOLVE grades states based on how much coverage is mandated. Some states like New York and Texas may be considered mandated states, but their coverage varies. In New York, insurance companies are mandated to cover certain treatments like IUI, but not IVF. In Texas, insurance companies are required to offer coverage in plans to employers, but employers do not have to purchase those plans.

IVF cost confusing

Even in states like Massachusetts and Illinois, the law doesn't apply to certain types of employers, such as those who self-insure. What's more, you may live in a mandated state, but if your employer is not based in that state, then your home state's coverage doesn't apply to you. Don't forget about deductibles, either. You may need to spend a certain amount before insurance will pay for anything. Certain tests and medications might be covered and some might not. If you'd like to take a look at your clinic's website to see what insurances they accept, that won't help much. Every person's coverage depends on their individual plan. What might be covered for your co-worker might not be for you.

the ivf package price is not the total cost of treatment

Is your head spinning yet? We'll table the idea of insurance for the moment. Let's approach this as though you're paying entirely out of pocket. What other costs might you incur in addition to the price of the IVF cycle?

  • Tests. Ask your IVF coordinator if your package has a limit on labs or ultrasounds during treatment. If there is a limit, how many labs and ultrasounds are included and how much is each additional?
  • Medications. Which drugs are included in the package and which are not? How much do they cost? Is your doctor able to prescribe generic or other brand labels that might be covered by insurance? Are you allowed to buy them on your own?
  • Labs. Does your clinic have an in-house endocrine lab or are your labs sent out to a third party? Labs will be drawn throughout your treatment that need to be resulted the same day. If your labs are sent to a third party, there may be an additional cost to you. 
  •  ICSI. Is Introcytoplasmic Sperm Injection included in the package? According to Sher Fertility Institute, ICSI is often required when cases involve the severest degrees of male infertility. 
  • Embryo freezing. Some clinics will store your embryos in cryopreservation for six months after your IVF cycle, and some might include it for a year. How many months are included in your IVF package? What is the fee for each additional month of storage? 
 There are even more potential costs associated with IVF

There are even more potential costs associated with IVF

  • Anesthesia.  If the clinic doesn't disclose whether or not anesthesia is included, it is likely that they charge an additional fee.
  • Donor eggs. Donor egg prices are not included in IVF packages unless specifically mentioned in separate pricing. The clinic may have their own donor bank or they may use a third party. If this is a need of yours, it will mean additional costs.
  • Surrogacy. If you have this need, the total cost of surrogacy may be as high as $150,000. 
  • PGD. Preimplantation genetic diagnosis can greatly improve pregnancy success rates by carefully selecting embryos. For older women, and women who have suffered early pregnancy loss, PGD may be all but necessary. Rarely do IVF packages include the cost of PGD.

See? Now you understand why it's so hard for clinics to quote one all-encompassing price for IVF, beyond the most basic IVF package. Rachel Gurevich of About Health reports that the total cost of IVF treatment averages around $20,000, as opposed to the $12,000 average cycle price. There are so many moving parts, it's virtually impossible to give you one set price. As far as clinics are concerned, they need to start displaying "sample pricing". As far as you're concerned, it's better to estimate very conservatively.

then why the heck doesn't my clinic just tell me all this?

This is a great question and it's part of the reason I wrote this post. Fertility practices need to get better at educating prospective patients on cost complexity. From my observation as a marketer, some fertility centers aren't good at discussing finances for two main reasons.

  1. Doctors don't like to talk about money. Generally speaking, they find it unbecoming of the conduct of a physician. They hold the patient-physician relationship to be very sacred and they don't want to cause you to think otherwise. They want you to know that they are invested in your care and not the financial arrangement behind it. I see two scenarios play out in online reviews--one that validates physicians'reluctance to talk about money and one that reveals an adverse effect. In the first scenario, the doctor is perceived as "money-grubbing" or trying to "sell" IVF. In the second, people are surprised by a bill and they lash out at their practice for a charge they weren't expecting. Finance isn't an easy subject to bring up, and that's why most physicians leave the discussion to their billing department. The appropriate sales conversation for infertility treatment is content for another post.
  2. Clinics are afraid to be punished for doing the right thing. What happens when a fertility practice tells you to budget $20,000, and you get a quote of $8,000 from one of their competitors? To a degree, this concern is justified. Tests show that, if not supported by the necessary context, pricing can sometimes drive people away. I would know. I am not the cheapest marketer that someone can hire and I never want to be. When I quote someone for a price, I want to include everything they might need. If I tell someone they should budget for a marketing strategy at $6,000/month, I include an advertising budget, graphic design, web development, etc. Someone else might tell them that they charge $600 per month for marketing services. That $600 doesn't do much but it sure sounds better than $6,000. No matter the service, people often ask about price before considering the total value being offered. This creates an undesirable cycle: you won't tell me your pricing until I'm more interested; I'm not interested until I know your pricing. This is very annoying for both parties involved, fertility centers and their patients.

be an educated consumer, and make sure they know it

So why should your  fertility clinic show you detailed sample pricing? Are they trapped in a catch 22? Tests prove that the advantages of publishing prices far outweigh the disadvantages Think of it this way. Do you ever stop shopping before you know what the price is? What is the cost of a ride across town? You won't know until the cab stops and adjusts their meter. So you choose Uber, because you see the price in advance, and peer reviews validate the experience you're looking for. To compete for your selection, fertility clinics need to be more upfront with pricing. Leave that part to me.

For your part, the more educated you are as a patient-consumer, the more information practices will have to provide to you ahead of time. You are now conversational in the basics of infertility financing. You will be fluent by the end of your journey. To start, you have some background knowledge of which costs to investigate. Clinics are reluctant to share more information on pricing, partly because they are concerned that their competitors will get away with cost ambiguity. Don't let competing fertility clinics win by giving you less information. As an educated patient-consumer, you have the power to let transparency rule the day.

 

 

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. 

 

 

5 Alternatives to Letting Your OB Choose Your Fertility Doctor That You Can't Afford to Ignore

By Griffin Jones

You alone decide, but you are not alone in informing your decision.

I've been writing a lot for clinics recently and I owe a lot more content to you, especially when you have big choices to make about which fertility specialist you're going to see. It's not an easy decision and it's not one a referring doctor or even a close friend can make for you. The choice is yours. This is the value that I've proposed all along; help practices improve so they can attract more patients and help patients be wise and clear with their decisions so that practices have to continually improve. Though I haven't created much content for you in the last several weeks, I have been doing a lot of listening. I really appreciate the feedback you've given me on Instagram about how you found your fertility clinic and what factored in to your decision making process.

 Awesome Dr. Seuss quote, via brightdrops.com

Awesome Dr. Seuss quote, via brightdrops.com

Frequently, people choose their reproductive endocrinologist (RE) because he or she was the closest to home, their OB referred them, or they were recommended by a friend. Maybe you put a lot of consideration into the matter.  Maybe you didn't even realize how much of a choice you had. Sometimes, that turns out just fine; the closest RE might be absolutely incredible. In other cases, people really wish they had chosen someone else. 

May the best doc win

All fertility doctors are brilliant. There are only about 1,300 board certified REs in the entire country. They go through four years of medical school, four years of OBGYN residency, and three years of REI fellowship. Then they get to take the hardest exams of their lives. Including undergraduate studies, that's fifteen years of higher education and training! There's not a dumb one in the bunch is what I'm saying here. Still, that doesn't mean they're all the same. REs are people. Like chefs, boyfriends, contractors, break dancers, and internet marketers...some are just plain better than others. 

Some are better surgeons, some are more personable, and some have better staff. I believe I've done more research on fertility reviews than anyone. People leave their opinions based on a number of factors. First, it's true that people are far more likely to leave positive reviews if they've become pregnant and far more likely to leave negative ones if they have not. You should be aware of this skew, because you would expect it to influence a doctor's rating. Somehow, however, there are a few dozen REs and practices in the United States and Canada who each have very few complaints and dozens of glowing reviews. How? There is no such thing as a fertility practice with anywhere close to a 100% success rate. It suggests that there are some all-stars who simply provide a better overall experience.

Find the right RE

Having read thousands of fertility doctor reviews, spoken to hundreds of people who have struggled with infertility, and met at least a few dozen REs in person, I discern my own very unscientific conclusion. 20% of fertility doctors over-deliver in nearly every aspect of the care experience, 20% are absolutely atrocious with patient relations, and maybe 60% fall somewhere in the middle. I feel as though many in this majority are good, honest physicians whose practice experience may vary from patient to patient because they haven't quite been able to embed that outstanding service into every facet of their operation.

I've told you before that fertility treatment is a business. I don't say this disparagingly, I love meritocracy. Even if you live in a state or province like Massachusetts or Ontario, it's still likely that you will be paying something out of pocket. You still have a choice of who receives your reimbursement. The value that I can provide to you is helping you utilize your leverage in your business relationship. We want the best REs and fertility clinics to be booked solid. The people who go above and beyond to deliver a better care experience deserve to make more money than those who do not. I really believe that. Those that stubbornly ignore patient feedback and don't invest in patient relations aren't entitled to stay in business. Let's cut our losses with the bottom 20% in patient satisfaction, I don't think we can change them. When we see 20 of 28 reviews describe  a fertility doctor as someone who "just wants your money," this suggest that this person just doesn't get it. So the question becomes, how do we impact the 60% majority to improve the overall standard of care?

vote with your feet

Let's start with the most highly rated REs, the ones people "can't thank enough." They have very few complaints and a great many compliments. These doctors are early adopters and innovators of a better care experience. They super-serve you because they are fascinated by exceptional care, or because compassion is simply one of their signature personality traits. The Diffusion of Innovation Theory asserts that the majority "needs to see evidence that an innovation works before they are willing to adopt it." In fertility terms, practices will invest more in individual attention, responsiveness, and empowerment when they see how excellent service boosts their competitors' top line.

early adoption in fertility care experience

You may live in a remote area where you really don't have more than once choice. That's a sad truth for many, and one we can only change with broader awareness of infertility and advocacy for better access to care. For everyone else, you don't have to choose someone just because your OBGYN referred them to you. You have several ways of exploring your choices.

1). Look at the clinic's success rates

Every fertility clinic in the country has to report their success rates to the Center for Disease Control (CDC). The Society for Assisted Reproductive Technology (SART) also requires its member clinics to report their IVF success rates. SART says that their data shouldn't be used to compare centers because patient populations may vary from clinic to clinic. That makes sense if the goal is statistical purity. Your goal, however, is to have a baby and some clinics have as much as double the success rate of others. You should be comfortable with a clinic's success rates before you decide on them.
 

Note: You should also reflect on how important this clinical metric is to your overall experience. In a brief report I conducted on people coping with infertility, slightly more than half said that extraordinary success rates with an awful bedside manor were more preferred than a compassionate, personable team whose success rates are well within the standard of care. There isn't a wrong decision here. It's your money and your emotional energy.  You may be able to find the best of both worlds, but you should decide which is the greater priority so you know what you're looking for.

2). Check their online reviews

Vetting a fertility center by their online reviews is an absolute must, even if you were referred by a close friend. Think of it this way. Do you hate your friend's favorite restaurant?  Imagine describing that restaurant to a third person. If the new person only heard about the restaurant from your friend, it would seem like the obvious choice. It's only when the newcomer has additional opinions to consider that her judgement is balanced. I've written in detail about how to use reviews to choose your fertility center because the more experiences you have to consider, the more whole your preview of the clinic will be. In addition to the platforms I've recommended before, a new site has caught my eye. Fertility IQ shows how patients rate their doctors on communication, response time, and even if they felt like they were treated like a number or a human. Patients answer qualitative questions about their experience and they rate the clinic on nursing, billing, atmosphere, and more. At this time, the site has too few responses to be able to adequately judge most doctors and practices, but keep it on your radar, because I think it will provide a tremendous amount of value to prospective patients. If you have already seen a fertility specialist, it would really help the community to leave a review there.

 Fertility IQ home page

Fertility IQ home page

3). Press your OBGYN

Maybe your OB knows the RE that she is referring you to very well. Maybe she's never even met him. Ask. Inquire about what opinions she has heard from her returning patients. Once patients finish with fertility treatment, they return to their OB, so your doctor should have plenty of feedback regarding the RE.

  • Were the patients delighted with their experience?
  • Were they disappointed?
  • What other REs would she consider referring you to?
  • What have patients said about them?
  • Why does she recommend that RE as opposed to others?

People sometimes tell me that they were really disappointed with the RE or clinic that their doctor referred. Make sure your OB knows if you weren't satisfied with your experience. REs aren't entitled to referrals and your doctor should be informed to protect her patients' best interests. 

4). Ask people in your support group

There are hundreds of infertility support groups out there; independent groups, faith-based groups, ones led my mental health professionals, and those that are peer-led. If there is a RESOLVE support group in your area (or a Fertility Matters group in Canada), you should visit one of their meetings before you even choose a fertility center. These are people who have faced the same challenges you face. They have felt the same loneliness, the same longing, the crushing disappointment, and the financial hardship. Most of them have already been to a fertility specialist. Tapping in to their collective knowledge will help you learn from their wins and avoid duplicating their regrets. They also have a good idea of how proactive the practice is in empowering patients to find support resources. You don't want to be left to fend for yourself when it comes to finding community and professional support.

5). Talk to people on social media

The #infertility hashtag has been posted more than 143,000 times on Instagram alone. There is a vibrant #ttc (trying to conceive) community on Facebook and Pinterest as well. On Instagram, I often see people from the same city discussing their experience at their fertility center. Take advantage of their knowledge. You can send private messages to people who have left reviews on Facebook and Yelp. Reach out to those who have left negative and positive reviews. Talk to as many people as you feel gives you an accurate picture of what is important to you.

The choice is yours

We don't live in 1981 when the first IVF cycle was performed in the United States. Back then, your only option to find a fertility specialist would have been from a referral from your doctor. Today, you have so many options at your disposal to make the best decision. You are going to let a very important person play a role in a very delicate part of your life and you will most likely spend thousands of dollars of your own money. A fertility practice isn't entitled to your money or your emotional energy just because one doctor referred them. You deserve the best attention, considering what you are putting into it, and frankly, fertility clinics with a better patient experience deserve to do better than those who ignore what their patients want and need. If you have already been to a fertility practice or have undergone treatment, I hope you share your experience in detail with anyone who is considering the same. 



5 Rules for Writing a Negative Review That Will Make Your Fertility Clinic Listen

By Griffin Jones

"If you're not a size 5, this doctor does not want to help you."

"After trying to contact the Dr. several times, I realized that no-one at this facility gave a crap, or even pretended to care".

"_____ is the worst doctor one can go to...I wanted to smack him right in his office."

Yikes. These are what negative fertility clinic reviews look like sometimes. These aren't hypothetical examples. They are real reviews of fertility doctors in three different U.S. cities. The reviewers may have needed to vent their frustration. Research from Harvard University shows that the stress and anxiety caused by infertility are equal to that caused by cancer. If you are writing a review about your fertility clinic, you may want to use the opportunity to release some of the tremendous frustration and anxiety. Your doctor or practice may be the person to release that on to. Heck, he or she might even deserve it. If your goal is simply to vent your pain and project that on to someone who may be partly responsible, I understand. I do it too often, for far less serious affairs. I make Delta Airlines feel my wrath on Twitter every time I fly with them. It doesn't solve the issue, but I feel a little better. For couples spending thousands of dollars on an emotionally draining fertility journey, the yearning for vindication must be very strong when they are failed.

If your goal is to be heard and listened to, however, may I suggest another approach? As someone that helps fertility centers respond to negative and positive reviews, I would much rather you feel the lasting vindication of a corrected problem than temporary relief. I want your problem to be corrected (most of the time it can be, one way or another) and I want the practice to get better. The way you write your review often determines what is done with the information it contains.

Google recommends that your criticism be constructive, because "business owners often use feedback to improve their offerings". In fertility terms: we don't want your legitimate disappointment to be interpreted as an inevitable byproduct of infertility's emotional burden . That perception won't benefit the practice or the prospective patient reading the review. If the comments are vindictive, as opposed to constructive, the practice may perceive your bad experience as inevitable. We want them to view it as evitable (that's not a word). We want reproductive endocrinologists (RE) to use reviews as measurable action items for improvement. If negative reviews are inevitable, then there's nothing to improve upon to avoid them.

If you were wronged in your experience, it should be rectified. Don't you at least want other people to heed your advice so they don't incur the same mistreatment? The prospective patient needs to be able to hear your concerns apart from your frustrations. Venting may be better suited for Instagram posts, private Facebook groups, support groups,  and forums. Review sites are  places to be heard because they carry weight with the practice and they influence the person making the decision to schedule a consultation. I advise fertility clinics  on how to respond to negative reviews, so that the practice listens to their patient. Here's how you can write reviews that practices and other patients will listen to:

1). Share a brief background about your journey: You have two audiences. The second is the fertility center. The first is the person who's deciding which practice she should go to. The more you have in common with your audience, the more they will pay attention to you. Whether you're fighting PCOS or coping with secondary infertility, it will help someone to know that.  Write two or three sentences about the problems you've been facing, for how long, and how it's made you feel. Forget the details that don't help you connect with your reader. 

2). Refrain from name calling and cursing. I tell fertility clinics not to respond to "vindictive reviews" which include the presence of vulgarity, name calling, and/or lack of reference to a particular problem. If someone calls the doctor "a complete idiot", the dialogue is already too hostile for us to participate. The entry to the conversation is closed before it's ever opened. The same goes for four letter words and other offensive language. To remain professional, the clinic/doctor has to keep away from these combative zones.

3). Give the benefit of the doubt when referring to people by name. Some review guidelines, like this one from Lifehacker, recommend leaving out proper names entirely. I disagree. Your review is a log of the most important events of your experience. If you really feel that someone from the billing office was exceptionally rude, or that your physician didn't listen to you, those details belong in your log. Just give the person the benefit of the doubt before you light them up. Show the reader that the issue is not a personal conflict between you and the team member. Offer the benefit of the doubt, then describe the problem. Example: "I know Dr. Blank has to see a lot of patients, but I really felt let down by how little time I had with him." By focusing on your feeling rather than the team member's short coming, the practice can do the same.

 Because this reviewer gave the physician the benefit of the doubt, we weigh the rest of the review with more deliberation.

Because this reviewer gave the physician the benefit of the doubt, we weigh the rest of the review with more deliberation.

4). Mention redeeming qualities if applicable: The doctor was late, the billing staff was rude, but if there was a nurse that made an extra effort to make you feel comfortable, that is worth mentioning. If it was an all around awful experience, don't force a compliment; it's important for people to know. Still, including a positive mention allows the reader to see your standard for what is acceptable and what isn't. Your experience informs your judgement, rather than blinds it.

5). Tell us what you had hoped for. Stating your expectations allows the practice to see exactly where they didn't meet your standards. It gives them actionable opportunities to improve and to correct the issue you're having. For example, "I hoped I would have a half hour with Dr. Blank, but instead I only saw him for two minutes." The practice can assess that they either need to allot more time for patient visits, or notify people that visits are very short. "I thought that insurance would cover these medications, but I had to pay out of pocket," shows the practice that they have to invest more time in helping people with insurance claims.

How to respond to negative fertility clinic reviews

You have a right to vent and a right to be listened to.  Exercise both, just exercise them separately. If you want to be heard, you will be better served by leaving a concise, focused review, even if it's a one-star rating. You have two audiences: the practice themselves, and the prospective patient using these reviews to make their decision. There is a chance that the practice will consider your concerns, and make an effort to correct the situation. If they do, thanking them or upgrading your review will encourage them to take patient feedback very seriously. If they do not, then they deserve the negative impact that it has on their reputation. Twenty years ago, you would have had very little power to express your thoughts and feelings. Today you have the power to affect infertility treatment for the better. Use it wisely.

7 Musts for Using Online Reviews to Avoid Choosing the Wrong Fertility Clinic

By Griffin Jones

Too often, I read an online review of a fertility clinic, in which the person says they wish they would have read other reviews before choosing that practice. In doing your online research, I strongly encourage you to take advantage of the reported experiences of other people, to help inform your decision. More than just a few times, I have read reviews where the person regrets choosing the fertility clinic despite reading negative reviews, sometimes because they followed the advice of a friend.

 A review from RateMDs

A review from RateMDs

Whenever I make a serious decision in life, I first want to speak to as many like-minded people as I can. I look for people who I feel share my profile and I deeply explore their experiences. For you, as a person coping with infertility, this will include consulting the #infertility and #ttc communities on social media, going to peer support group meetings, and thoroughly reading online reviews.

Part of what I do for a living is help fertility centers and doctors improve their online reputation. There's no real shortcut here. You can't delete reviews that other people write about you on the internet. In a 2016 world, practices need to make sure you have the best experience possible. If you're satisfied with the effort and attention that you received from your care team, you won't leave a negative review. If you're delighted, you will want to tell the world. That's better advertising than they could ever purchase. Fertility practices greatly benefit when they have a stellar online reputation, but that benefit belongs first and foremost to you. Online reviews exist for the people reading them, not the people they are about. 

I've written guidelines for fertility centers on how to respond to both negative and positive reviews. Now I want to share that experience with you so you can use fertility doctor reviews to avoid regrets and find the best fit for you. Here are seven things to keep in mind when finding a fertility center:

1). Check multiple review sites. Different review sites are more widely used in different cities. Check these nine sites to see which have the most reviews in your area. Simply enter your city, state, or province into their search field, and select the corresponding specialty.

  1. RateMDs: Reproductive Endocrinologist
  2. ZocDoc: Infertility Specialist
  3. Vitals: Reproductive Endocrinologist
  4. Healthgrades: Reproductive Endocrinology and Infertility
  5. UCompareHealthCare:  Reproductive Endocrinology
  6. Fertility Authority: Fertility Doctor or Fertility Clinic
  7. Yelp: Fertility
  8. Google Reviews: Appears in the Google+ frame of a search for the clinic/doctor's name
  9. Facebook: Usually linked to the practice's website

2). Read beyond the star rating. In my opinion, Vitals, Healthgrades, Fertility Authority, and UCompareHealthCare, are the least helpful of the above options when searching for a fertility clinic. I suppose if there are enough responses, then it helps to see if someone has a two star or a five star rating. Still, I think these sites are better designed for a chriopractor or a dentist; a specialty where a rating on timeliness and billing would suffice.

You know all too well that infertility is much more emotionally involved than that. I recommend diligently reading the comments. ZocDocs, Google Reviews, Yelp, RateMDs, and Facebook are sites where the star rating is accompanied by a comment (you know, an actual review). Read as many as you can. If there are enough, you will be able to get a better idea of the practice or doctor. 

3). Read as many reviews as you can find. Two or three samples won't show you a complete picture of the personality of a physician or the culture of a practice. Thirty will. Look for recurring themes. If eight out of nineteen reviewers call the doctor "arrogant", or fourteen people say she "is the most compassionate person ever", that is probably more reliable feedback.

4). Be aware of the bias that exists because that bias matters. Positive reviews are far more likely to come from people who became pregnant and negative reviews are far more likely to come from those who did not. In a study I conducted in 2015, I found that positive reviews are three times more likely to mention a baby or a pregnancy than to mention unsuccessful treatment or to make no mention at all. Equally, negative reviews are three times more likely to mention a lack of success than to reference a baby/pregnancy or to make no mention at all.

Study on negative fertility center reviews

This is massively important because, as a prospective patient, you should know that no one can guarantee a 100% probability of success. There are several doctors and practices with very few negative reviews. This isn't because their IVF success rates are at 85%--that doesn't exist. It's because of their bedside manor, helpfulness, compassion, reliability, and communication. All of these things matter to your choice, because the clinical result of a pregnancy is not the only factor in your experience.  A physician or clinic with many authentic positive reviews and few negative ones is more likely to properly set and manage your expectations.

study on positive fertility clinic reviews

5). Utilize Facebook: With regard to the above, know that Facebook reviews for fertility centers are far more likely to be positive than negative. My untested hypothesis is that this is because we generally use our real names and identities on Facebook, as opposed to a username (Yelp) or remaining unidentified (Ratemds). Recalling a negative experience may be too emotionally burdensome for someone to associate with themselves so personally and yet so publicly. In my personal opinion, a fertility center with less than a four and a half star rating on Facebook is not a good sign. For other sites, a good practice and team could still feasibly have a three and a half star rating. Again the number of reviews matters (at least ten).

6). Message the reviewers. Sometimes people will leave their contact information in their review, because they would love to answer your questions and share their experience. In the case of Google+, Yelp, and Facebook, you have the opportunity to click on that person's name and send them a message. Take advantage of that! If it were 1996 instead of 2016, you would have to wait outside of the fertility practice like a creep to ask people what it was like. Today, those that want to share their experience are doing so publicly. There's no magic number of conversations that you should have, so let's call it five.

  • Tell them what your greatest concerns are.
  • Ask them what their greatest concerns were.
  • Were their concerns relieved or confirmed?
  • What did they learn from their experience that they wish they had known before? 
 Remember to search for other cities and suburbs around you.

Remember to search for other cities and suburbs around you.

7). Leave your own review after your experience. At least one, on the site that you found most helpful. If you go to the deli to buy a $5 sandwich, and you're not satisfied, you don't have to tell the world. Anyone can live with the consequence of a mediocre lunch. With your journey, aren't you almost compelled to offer your experience so that someone can make a more informed decision? With the emotional cargo, financial burden, and uncertainty that characterizes the infertility journey, aren't you obliged to warn or make recommendations to others? There are countless couples and individuals that share the same concerns as you and your partner; your opinion could really help them. Use a site where you leave your real name or one where you remain completely anonymous, depending on your personal preference. It's not my place to say, but I think that the prospective patient population would be much better served if every person that underwent fertility treatment left an online review afterward: good, bad, or neutral.  

Take advantage of the wisdom of others

Online reviews don't exist to benefit hotels, restaurants, vacation destinations, products, or medical practices. They exist to benefit guests, patrons, consumers, and patients. Fertility clinic reviews are channels for you to share your experience and the purpose of these channels is to benefit other people facing choices similar to ones you have faced. If you are considering a fertility doctor or practice for the first time, please, don't just look at their website. Take advantage of the wisdom of others who will be able to greatly inform your decision. If you are a veteran of fertility treatment, please give others something to consider by writing an online review.

Did you read reviews before you chose your fertility practice or are you using them now? What have you discovered?

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?