July 15, 2020 by Mackenzie Timbel
Even before the COVID-19 pandemic and overnight surge of virtual technology in the healthcare space, the tech sector was quickly establishing a foothold in the fertility industry. Tracker kits, planning apps, specialized electronic medical records, and gamified mobile apps for trying to conceive were flooding the industry. These technology solutions were trying to address a gap in the industry that most fertility patients are intimately familiar with: the chasm of panic and confusion between the clinic and the patient. This chasm is full of misinformation, costly miscommunications and a frosty feeling that is pervasive in this portion of women’s healthcare. To an outsider, it seems the bridge over this chasm should be constructed with solutions using empathy and humanity in order to address the issue facing patients both physical and mental. However, fertility patients are different. Their condition is invisible to the outside eye and while not life-threatening, it does threaten to tear down the often life long dreams of having a family. Therefore I find myself asking this question: even if fertility needs more humanity, are more technology solutions actually the answer? Like most things, it’s complicated.
While searching for evidence and information to find an answer to this question, I came into contact with Alison Connolly, a new mother to an IVF baby and a multi-year journey with infertility. She and her husband underwent years of testing and completed three failed IUI’s before deciding to try IVF. Alison described the two different treatment types by saying, "IUIs felt like you were taking your first swing at little league and it was new and terrifying and felt like a big deal and then once you get into IVF you realize you are now pitching in the World Series.” After two rounds of IVF, a cancelled transfer and infinite heartache, they were finally successful and had a baby earlier this year. In the eyes of the clinic, Alison and her husband became a positive statistic and her struggles, challenges, and overall experience are relatively forgotten.
As Alison gets space from her experience and settles in with her newly growing family, she begins to look back and understand how deep the chasm between her and her providers really was. As a final reflection, she told me, “ I would not wish [infertility] on my worst enemy.” It is clear that fertility patients need more support than what their clinics are offering them. As a working woman with a background in business and understanding of the tech sector, Alison seemed like an excellent person to help me answer my question.
When speaking over the phone with Alison, I asked her what qualities would be hallmarks of a successful patient support system. Her response outlined a triad of essential qualities: knowledgeable about treatment from the patient perspective, relative social anonymity, and trusted. Our discussion included her personal experiences mixed with a brainstorming session that resulted in the following outline for an effective technology solution to fill the gap between fertility clinics and their patient’s experience.
This quality is the most achievable. With a good medical advisor, thorough research, and a good science writer, almost any tech solution can become knowledgeable in the fertility field. However, the most effective solution will be the one that makes that information available at all hours of the day in an intuitive interface. That knowledge needs to answer the silly questions and the sensitive questions with the same level of thoughtfulness and urgency. Alison remembers instances of waiting all day to hear from her fertility nurse about dosage changes only to finally receive a call back while making a presentation in the boardroom at work, unable to step away. This is the most pervasive gap in fertility clinic service but also the most easily remedied by technology solutions.
Alison’s mention of relative social anonymity was something that surprised me. She called it “an island.” As someone who hasn’t actually experienced fertility treatments, it is nearly automatic for me to remark that a good support system built from existing personal connections would remedy lots of the mental health aspects associated with the process. I mean, friends and family are the best support system right? Alison set me straight.
The struggle with fertility is something that actively divides a person from their social group. As some focus on baby showers and family building, those who are struggling to grow their family are actively excluded. Due to the isolating nature of infertility, the most effective support system for patients—that meets them where they are—needs to be on that “island.”
For Alison, it came in the form of a professional network connection that she ran into in the waiting room of her clinic. That person knew no one within Alison’s social or familial circles but over time it was that person who became Alison’s support system: translating regimens and med instructions, filling prescriptions so as not to under or over buy, and general questions that fertility clinics aren’t always available or positioned to answer. Any support solution, technology-based or not, needs to leave room for anonymity in the patients’ lives. A patient should not be required to abandon privacy or anonymity in the work, social or family circles just to receive the support they deserve.
The third essential quality appears simple but is actually the most complicated and ambiguous. At the outset of a fertility treatment, there is a shift that occurs where you are no longer trying to have a baby and instead you’re having trouble having a baby. In Alison’s experience, that shift happened so gradually that by the time she and her husband fully realized the gravity of their situation, it felt as thought their clinic hadn’t been honest with them about how difficult fertility treatment was and how devastating actual outcomes could be.
They are not alone in that sentiment. At that point of full realization patients have likely experienced enough communications issues, isolative situations with friends and family, and mental health sabotage that they no longer blindly trust their clinic, its doctors, and its nurses. Therefore it is clear that the doctor-endorsed solutions will not effectively check the box of being trusted in the eyes of patients. Instead, the endorsement of “fertility alumni” will be the defining quality that allows current patients to trust a solution. A solution that can leverage a clinic’s knowledge and resources with the honesty and camaraderie of those “fertility alumni” will actually offer support to patients rather than just be another auxiliary of a clinic that doesn’t live up to expectations.
Now, back to the main question asked in the beginning of this blog post: even if fertility treatment needs more humanity, are technology solutions actually the answer? I can’t dodge this question with the cliched answer of “it’s complicated.” Now after speaking with Alison and other patients like her my answer is as follows: Yes, a technology solution can fill the gap in the fertility industry. It just has to be the right one.