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 another...at 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.

WHERE DO WE START?

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.