Week 1: research the user group
When the sponsors at NYU Langone finally revealed the project prompts, it is surely surprising to me. On the one side, the transgender and the nonbinary group is such an interesting topic that I almost have never thought about because it is still something I am not familiar with due to limited connections and accesses; on the other hand, it is also a challenging topic that it needs a lot of in-depth research and careful consideration for the fact that this group is one of the most marginalized groups in the society because of social stigma and discriminations.
The research process for me is a learning journey. I feel ashamed that I have never almost paid a lot of attention to the LGBTQ community anywhere in my professional or academic life that I do not know the barriers and stigma they are facing are limiting from them accessing so many resources that are not being considered as problematic for me. Because I am so unfamiliar with this topic, my strategy is to research for real-life stories first rather than reading analytical or research papers which talk about the health disparities on a macro scale.
This idea of the Double Diamond design process is something I learned in Steinhardt that I have been trying to follow along with every project I work on. Right now, we are still on the first half of the first diamond by conducting intensive research in order to build empathy. This model is surely something I would follow along throughout the process, and this “divergent and convergent” iterative process is something extremely useful in a group project situation to open up the minds and then come up with a group solution.
The barriers to health care
Lambda Legal shows that more than 70% of transgender people nationwide say that they have experienced serious discrimination in health care. As a result, a great number of transgender people are trying to avoid going to medical services as much as they can because the experiences are too harsh and uncomfortable that break them down from the inside. Transgender people are having a tough time finding health care and the mental health services they need due to the social stigma and discrimination that can result in ignorance and misunderstanding. LGBTQ community tends to have fewer people enrolled in health insurance, and one of the most predominant factors is higher unemployment rates due to discrimination and stigma. Even within the health insurance policies listed, more than often, the medical services that are needed and unique to transgender people are usually excluded, which limits off the access to healthcare compared to others.
Bad medical experiences
I decide to go onto YouTube for real experiences and stories to understand what the transgender and gender binary groups are struggling with in real life. I found this video from The Oregonian interviewing a group of transgender Oregonians about their most horrifying medical experiences.
“99% of the time when I got to a doctor, I am anxious and nervous”
“Even though insurance, driver’s licenses, and everything say female, you never know what to expect.”
“I don’t think I know a single transgender person that has gone through the medical system with a good experience, not in this country.”
The bad experiences the transgender people have encountered broke the trust in the medical services they should be enjoying. Misgendering, discriminations, and assumptions/generalizations are something that really frustrates them. The insensitivity and the lack of knowledge from the medical providers is the key that makes this entire experience frustrating, anxious, and uncomfortable for a lot of transgender people, which they actually deserve equal medical services with extra care.
Forgoing routine care after trauma
The bad experiences of being misgendered, mistreatment and discrimination that happened to the transgender patients, many of them chose to not go to the clinic because of the mental stress and anxiety they suffer. “I once have a therapist who misgendered me to an entire room of people..he never talked to me, never looked at me into my eyes, and never apologize. As a transgender woman myself, I get misgendered nearly on a daily basis, but having that in a medical setting? That’s something I could have opted out of, and I will, for my own mental health,” said a transgender woman in the interview with The Oregonians. According to a report by the Center of American Progress, nearly half of the transgender people — and 68 percent of the transgender people of color have experienced mistreatment at a medical provider, including refusal of care and verbal or physical abuse and discrimination. As a result of unwillingness in receiving medical care due to fear and anxiety, transgender people are suffering from a higher rate of stress and mental disorders, as well as poor physical health conditions compared to the rest of society.
From all the research papers and real stories I have learned during my research, I would say I am pretty shocked. I remembered during class, I was trying to think what kind of problems and difficulties would the trans population encounter but I couldn’t actually think on top of my head. After learning all this from real experiences, I’m just so shocked at how much suffering and frustration the trans community is experiencing due to the discrimination and stigma from the majority of the society even just on one side of life — health care, which everyone should be treated equally. This reminds me of what the sponsors from NYU Langone said during the class that there wasn’t enough to be done yet, unfortunately, and this is why we as designers should think about providing equity for the transgender population so that they do not risk their lives not going to the hospital because of their worry and concerns of being treated inappropriately.
Some early ideas
Transgender individuals belong to one of the most stigmatized groups in society. The assumptions and expectations from people who are lack knowledge of this group of people, together with nonbinary and genderqueers, are breaking people from this community apart from the inside. Not only that they couldn’t access the health care benefits as the rest of the society does, but also bring higher possibilities of suffering mental disorders, substance abuse, and even suicide. We as designers, really need to work hard on changing the situations.
Education and training
“I think there is an incredible lack of education that’s done in medical schools and I think the medical community just like the community-at-large is woefully ignorant of these issues. And I also think an awful lot of practicing physicians and nurses just don’t understand this phenomenon,” said Dr. Kand McQueen, a master keynote speaker on issues of the transgender experience, in the interview with Indiana University School of Public Health. “And because of that lack of education, I think there is a lot of knee-jerk reactions that come from the medical professionals, and it’s directed at the transgender person. We don’t need that.”
The lack of knowledge and training of what transgender population from the medical professionals is a critical reason why this patient-medical provider trust has been broken. Gaining empathy and understanding from a medical perspective to transgender patients is the key to solving the problem. This can include required training on:
- knowledge about gender identities, gender expressions, and sexual orientations
- primary care and special care of transgender patients, including therapies, medications, hormones, mental disorders, etc
- awareness of the transgender, nonbinary and genderqueer patients and communication strategies and tips while providing medical services to them
As a way of presentation, the medical providers (doctors, therapists, nurses, physicians) should have a special mark of certification near their names either on the website or on their actual name tag, something like what Penn Medicine did.
Inclusive patient portal
One interviewee in a video conducted by Indiana University School of Public Health said that just simply going into a medical clinic gives them a lot of anxiety because they do not know what will be asked, and even how to fill out paperwork. From a lot of other transgender patients’ real experiences, being misgendered and called the legal name in front of a room full of physicians and clients is extremely uncomfortable and disturbing — some patients just left without receiving the services they are supposed to get. If the check-in process for the patients can be more inclusive and welcoming, with enough attention and awareness from the health providers, this in-take process would be ironed out in a more comfortable way. Some features can be:
- Options for Name v. Legal name (with the explanation provided aside for the reason of collecting this information)
- Pronouns
- Transgender patients special check-up that includes mental health, hormone, medications, gender affirmation therapies, etc
- Notes for the medical staff if there is something in particular that needs to be paid attention to
All the information should be coded and loaded to the system under the patient’s medical records that everyone on the medical service team can read and access.
Reflections
As I do more research, I think about inclusiveness, being the center of design principles for all types of designers across the spectrum. The first time this comes to me is when I was designing a data visualization piece at my previous job, my manager suggested I change a color scheme because what I chose might be confusing for color blindness. Universal design is something I learned from one of the core courses at Steinhardt that really reflects being in the users’ shoe situations. It means “the design of products and environments to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design”. One of the principles of UD is “Equitable use” that the product should be designed in a way that is useful and marketable to people with diverse abilities without stigmatizing or segregating any users. I feel extremely lucky that this project with NYU Langone provided me with an opportunity to really think about a group of people that can be ignored and neglected by the society-at-large. The idea of universal design makes a lot of sense in theory, while in practice, it is challenging. I would like to use this project as a way to design something that is based on theory, grounded in research, and designed in a way that can really change the status quo of what the transgender population is struggling in real life.
Think as the users, that’s what designers, in particular, UX designers should always keep in mind wherever stage they are in during the design process.
