Louder Voices: Women Need More Influence in the Creation of Women’s Healthcare Spaces

I support IVF. I also experienced IVF — it blessed me with two of my three children. But I experienced IVF like never before when I listened to “The Retrievals,” a podcast from Serial Productions and The New York Times. It was completely maddening and eye opening — and something everyone needs to hear. [Spoiler alert: It’s about a nurse stealing fentanyl, a crucial pain medication for the retrieval of eggs during the IVF process, and replacing it with saline, which is basically water.]

Many patients received NO PAIN MEDICATION during their IVF procedures. Even worse, their complaints about the pain were written off by doctors and nurses alike. Hearing these women relive their physical and emotional pain during a process so draining and complicated was almost too much to bear.

When I was going through IVF, I remember saying to my doctor during retrieval, “I can feel that.” He listened and pushed more meds. While it stopped the pain, I was still very aware of what was happening. But that’s not even close to the experiences women shared in “The Retrievals.” ?Even more important — and disappointing — is the dismissal of their pain from day of retrieval to even today. As the podcast shares, there’s little legal recourse for these cases, or any way to feel like justice was served for the pain they endured. But there’s things we can learn from and improve on.

We Are Unique

IVF is a uniquely female medical process. Designing the patient experience for women seems obvious. It’s “our” experience, after all — the endless doctor visits preceded by apprehension and followed by the agonizing wait to see if you can proceed to the next step. There are partners, spouses, family and friends supporting us, for sure. But they’re the spectators. We’re the players.

Listening to the podcast, I was shocked and horrified, and I could feel the pit in my stomach growing. These women said they felt “dismissed” and “crazy.” They were called “hysterical.” It changed their relationships with their doctors, with healthcare — and with their own health. Fear replaced trust. They weren’t seen or heard. They were telling the truth during the experience — and again on the podcast. Reading between the lines, I began realizing the experience broke down because so many aspects of the experience failed.

What does design have to do with this?

Research-driven design is crucial to creating positive experiences in healthcare. Our current healthcare spaces are largely rooted in past presumptions made by a traditionally male-dominated field. This includes medical care for women, space for women, needs of women and the feelings of women. It’s time to start asking, hearing and engaging more women in the creation of care spaces for women. Without it, we enable unconscious bias, prejudice and cultural disconnect to drive the process.

A designer has a responsibility to include community and patient research as a non-negotiable aspect of design strategy. And to educate our clients about the importance of asking relevant and sometimes difficult questions to understand lived experience, latent need, workarounds, invisible barriers and more — even if it’s hard to hear. And even if it costs more. User research allows designers to become translators of the patient journey, instead of authors.

Great designers integrate “future of” thinking into the entire process. To account for every variable in design — from care models to the patient experience to desired patient outcomes to efficiency goals. The art of translation is nuanced. It requires talent, research and an openness to represent someone else’s story.

Reflecting on the stories from “The Retrievals,” a litany of questions came to mind. Could a holistic design strategy and translation have helped:

• Reduce unconscious bias?
• Better protect or account for the pain medications?
• Drive a culture of listening?
• Empower patients to advocate for themselves in the moment?

I believe the answer is yes.

If organizations really want to give patients the right experience, foster their trust and loyalty, and deliver healthcare that meets their expectations, they need to embrace design as an integration of space, process, operations and technology. And see it through the lenses of the people they serve — people with diverse cultures, lived experiences and healthcare expectations.?

The power of design resides in its potential to have a positive effect on every human being. That’s why the most effective designers design through the eyes of those who need the space the most.

Please listen to the women in “The Retrievals.” Let’s learn from their painful stories and commit to designing better experiences for every woman who follows.

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