A Community in Crisis
During his sophomore year while interning at Garden State Equality, New Jersey's statewide advocacy and education organization for the LGBTQ community, biology major Liem Ho '17 would often overhear people calling in to give testimonials and ask for doctor recommendations. Inspired by a database journalism seminar he had recently attended, and using a list provided by GSE, Ho came up with a resourceful idea to create a service that helps connect patients with LGBTQ-friendly health care providers.
"There are a lot of people who don't have proper health care and who are very cynical of the health care industry," says Ho, who was born in New York City and grew up in Basking Ridge. "I think one of the big movements in health care is not only providing communication between the patient and the provider but also ensuring that people get the quality care they deserve and need."
Recent national surveys have found that 1 in 4 low and middle income LGBTQ patients lack health insurance. Of the patients surveyed, 19 percent say they were refused care because of their gender identity. What's more, 28 percent of LGBTQ respondents say a provider verbally and/or sexually abused them, and 50 percent of patients say they had to teach their providers about LGBTQ care.
"Our community is in desperate need of a resource that points us in the directions of health care facilities that serve us and treat us as whole human beings," says Rev. Janyce Jackson-Jones, executive director of the Newark LGBTQ Community Center. "There are few places we know that have the capacity to address our needs and sensitivity to treat us with respect and understanding. This has kept many LGBTQ people from seeking medical help, and prevention care such as mammograms. The community not only needs doctors who understand their medical needs, but we also need facilities that are culturally competent from the moment we make that call for an appointment or to ask about health insurance."
In Search of a Mentor
Ho had no doubt that his project one hundred percent needed to happen. But without any developing or programming experience, he was unsure where to begin or how to convert his idea into a reality.
Last spring, Ho received the opportunity to apply for university funding. That's when he decided to reach out to professor Michael Lee for guidance and feedback.
"I looked through the initial proposal, and I could tell that this was something very important," says Lee, who specializes in human-centered computing at the Ying Wu College of Computing. "I was a bit concerned at first that Liem didn't have development experience, but I knew that I could help him with that," he says. "It's a simple enough project that people can get their hands dirty to learn the programming process. Plus, I knew if we could get this service out there, it would benefit a lot of people."
Before embarking on the project, there was some research involved to make sure that they weren't about to emulate an existing system. "Sadly, there are very few places dedicated to this kind of information," says Lee. "That's when I said, 'Well then, we've got to make one.'"
Armed with a 2016 Provost Summer Research Fellowship award and data from GSE, Ho, Lee and Eric Schneider--a New Providence High School student recruited to help out on the project over the summer--moved forward with the development of a prototype.
Paving The Way
What was once a static Excel file of some 200 names and numbers is now Map + Expand, a Google Map populated with LGBTQ-friendly health care providers based in New Jersey and nearby Philadelphia.
The working prototype, which is a subset of GSE, boasts cross-platform compatibility, allows users to search the website for providers and physicians by name and location. It also offers general information, like email and street addresses and points of contact.
Soon, there will be a field that allows users to trigger a search according to specializations and specific services needed. "We're trying to go through all the possible keywords, technical terms and lay terms people might use, such as transitioning, hormone therapy, physical exam," says Lee.
With a background in computing education research, Lee's main objective is to keep students engaged and make computer science super-easy to understand--something he stressed to Schneider and Ho during the development phase.
"I told them the service needs to be as easy to use as possible; require the fewest numbers of clicks; everything should be easy to navigate," he insists. "The whole thing is pretty much a map: where am I? Are there providers in my area? What services do they provide? Get the information and go."
What's sure to be the website's most important feature: a mechanism that will track people's experiences, allow for feedback and publish crowd-sourced reviews--much like Yelp.
"I use Yelp all the time," says Ho. "I thought if we could implement a similar system for people looking for LGBTQ-friendly health care providers--providers that know how to use proper pronouns, know how to treat people with respect--it would build more trusting relationships." Adds Lee: "It will also serve as a safe space for people to be able to leave input as a community, add more providers and information about physicians, their specializations and the services they offer."
Next Steps
Before releasing to the public, Ho and Lee want to enhance the usability of the website. To do so, Ho will continue to amass data on health care providers and is also in the process of applying for more grants to help secure two developers--preferably a team of undergrads at NJIT--and a graphic designer to create a polished website people will trust and want to use.
"Having an understanding of how website architecture and app development works has given me a better sense of how I want to pursue and execute this project," says Ho. "I've learned a lot."
In many ways, Map + Expand is the ultimate expression of what has driven Ho from the start.
In addition to studying at NJIT, where he's a resident assistant and the multimedia editor of the university newspaper, Ho also works with the New Jersey Innovation Institute to assist health care providers with the Physician Quality Reporting System, a health care quality improvement initiative instituted by the Center for Medicaid and Medicare Services. And he recently landed a project management internship with Viacom.
"Yes, I've got a lot going on," he admits, smiling. "I love working and interacting with people."
But it's Ho's tireless crusade to advocate for the disenfranchised that encapsulates what could be the up-and-comer's legacy in the making.
"This resource will help us to see which sections of the state are more inclusive than others, and we can act on that," he says. "When you choose a place to live, you want to make sure that all the vital resources are there--and that includes proper health care."
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About NJIT
One of the nation's leading public technological universities, New Jersey Institute of Technology (NJIT) is a top-tier research university that prepares students to become leaders in the technology-dependent economy of the 21st century. NJIT's multidisciplinary curriculum and computing-intensive approach to education provide technological proficiency, business acumen and leadership skills. With an enrollment of 11,400 graduate and undergraduate students, NJIT offers small-campus intimacy with the resources of a major public research university. NJIT is a global leader in such fields as solar research, nanotechnology, resilient design, tissue engineering, and cybersecurity, in addition to others. NJIT ranks 5th among U.S. polytechnic universities in research expenditures, topping $126 million, and is among the top 1 percent of public colleges and universities in return on educational investment, according to PayScale.com. NJIT has a $1.74 billion annual economic impact on the State of New Jersey.