When it comes to the world of health, words are important, according to panelists at Rock Health’s annual summit. What language is used by clinicians, caregivers, even digital health companies can boost inclusivity or cause exclusion. That’s particularly true for groups of people who have been historically marginalized, such as the LGBTQ+ community and people of color.
“Particularly in the queer and trans community, we talk a lot about inclusive language,” A.G Breitenstein, founder and CEO of Folx Health, said. “I think the real work is figuring out how this system centers certain body identities and make[s] assumptions about people.
"It’s really about unpacking that and understanding, when you are serving populations that don’t fit a white, straight, heteronormative, cis-gender frame, then you are really starting to rip apart some of the true guts of the system and build it in a way that is reflective of people’s values, their desires, their understandings, the way they think about themselves and their bodies. Language is a great place to start, but when you start down the road it gets really interesting, and that’s where the substantive work begins.”
Another area where language has historically had shortcomings is the world of maternity and reproduction. Halle Tecco, CEO of Natalist and founder of Rock Health, said that, while the bulk of her clients are cis women looking to become or who are moms, it’s important to remember that not everyone who is looking to become a parent fits into this traditional paradigm.
Simmone Taitt, founder and CEO of Poppy Seed Health, said that on her telehealth platform, which supports pregnant and postpartum patients, the team is looking to use the most inclusive language and syntax.
“Language is important to us. We spell women with an x. So, it’s womxn, and I’ve gotten multiple times that we have typos, but we don’t. We are very intentional about that,” Taitt said. “We use the language 'birthing people,' for example, because you can identify as nonbinary or however you identify. You aren’t necessarily identifying as a woman in the most traditional sense, and we want to be inclusive there as well.”
The words used to describe medical events in the maternity space can also have hurtful implications for patients and need a revamp, according to Tecco.
“In the OB world, there are a lot of terms, very poorly chosen terms we are trying to combat,” Halle Tecco, “One of them is what they call miscarriages – they call them spontaneous abortions. For women who are trying to get pregnant and have a miscarriage, there is already a sense of guilt like it’s your fault. To hear the term spontaneous abortion almost puts the blame on the woman who is experiencing the miscarriage. The other thing that as a 36, almost 37-year-old woman that I hate is [the term] geriatric pregnancy for when we [have a baby] after 35. So, we are combatting decades and decades of language that has been developed by white men in the industry who have been dominating women’s health for too long, and trying to just undo these terrible word choices.”
One way that the CEOs on the panels help facilitate inclusion is by having a representative workforce that reflects the clientele of their business. For example, at Folx the staff is made up of queer and trans-centric clinicians who have lived experience.
“I think fundamentally it’s about trust. I think the healthcare endeavor as a whole across any organization, across any company, you have to earn the trust of the customer base, you have to earn the trust of your customers, or your members,” Breitenstein said.
“I think, when an experience is so specific and so unique, you really need to have somebody who has that perspective of what that lived experience is, because it is the way in which somebody can register. I can tell you in words what this means and how it’s felt, but unless you’ve lived it, it’s very difficult to translate that.”
Kristina Saffran, cofounder and CEO of Equip, said that in the eating disorder space, caregivers with lived experiences are often told not to share with patients. However, her company has taken a different route and included peer support and family support
“We said, 'Hey these are the people who really understand. They’ve been in your shoes, and they can help you move forward with recovery,'” Saffran said. “Everyone brings their best selves to a session with the therapist or nutritionists, and it’s those peer mentors or family mentors who get the text when someone is having a panic attack because they accidently saw a number on the scale, or when there is a huge tantrum during dinner the parent can text their family mentor, and those folks are really equipped to show up with them in the way that they need to be shown up for.”
As the digital health industry moves forward, panelists urge the industry to also continue on the most inclusive language around women’s health, LGBTQ+ health and family planning.