Riley Johnson's quest for better healthcare is personal. "It's always been a challenge, as somebody who's queer and trans, to find quality healthcare and to know what you're walking into," he said. "The National Trans Discrimination survey found about half of trans people were having to teach their providers about their care. And the part to me that was astounding was that about 2 percent of their respondents had experienced physical violence in a medical center."
Johnson consulted referral lists for trans-friendly providers, but they were littered with dead ends. "There were people I knew who were deceased, people who had retired," Johnson said. Thus was born the idea for RAD Remedy, an organization committed to improving access to health-care resources for the queer and trans communities.
"RAD" stands for "referral aggregator database," and the organization's main project so far is a searchable database of accepting health care providers nationwide. In 2014, Johnsonwhose background is in public health, not technologyentered the Trans*H4ck with RAD Remedy's proposal. It ended up winning the Trans*H4ck, earning the project seed money.
"It's been a pretty successful beta so far," Johnson, now RAD Remedy's executive director, said of the database. "We've not had any major technical issues, and we're continuing to include more and more resources. We're up to about 2,000 right now."
Databases before RAD often relied on providers self-identifying as LGBT-friendly, Johnson said. "We did a needs assessment and folks actually pinpointed the ability to self-identify as being a hindrance in some ways," he explained. "Up until RAD we didn't have a way of identifying people's expertise or their friendliness or their experience in dealing with different kinds of people. Somebody might be able to work well with me, who looks the part of a binary man, but somebody who's non-binary, or a young person, or undocumented, or a sex worker, these various layers may impact the degree to which somebody's able to get care. Rather than telling people who a good provider is, we want to give them maximum information and let them make their own decisions."
According to Johnson, RAD Remedy takes a unique approach to data. "There is a review for the provider, there's a review for intake staff, there's a review for other staff, and then there's an overall review. We've had some situations where maybe the intake staff is not so good, but then the provider behind it is fine," Johnson explained.
"In traditional spaces like Health Grades or Yelp, sometimes they don't have those facilities. What we've been able to do by providing the narrative, if say we have an intake staff person named John who is consistently problematic, we can approach that provider and say, 'Hey, you might need to train John.' We can work with them to alleviate the trends that we see." RAD also collects info on accessibility and sliding scale from both clients and providers, and offers providers consults on forms and systems, Johnson said.
The organization is committed to mapping rural areasJohnson grew up in rural Illinois and found getting care there nearly impossible. Initially, Johnson said, RAD planned to wait to release the beta database. "We wanted it to be really diversely populatedif someone was from Alabama or Iowa, they would be able to see resources near them. But at the same time we were dealing with community organizations, suicide lines and help lines, that had an urgent need to refer people places," Johnson said. Because of this, the beta launched early.
North Dakota stands out to Johnson as an example of RAD Remedy's potential influence.
"Trying to find trans-friendly medical providers in North Dakota has been a bit of a challenge," Johnson explained. "By way of contacting people in South Dakota, we determined that people in North Dakota are actually driving three to four hours one way to Minneapolis. They're getting what they need, but it may not be acceptable in the long run if we feel like people shouldn't have to travel that far. We're going to try to build up a colleague circle around the one provider who we found within North Dakota. The hope is to grow it, to have somebody in some way willing to come on record as being willing to serve trans people," he said.
The same goes for Chicago. "Our goal is to really map all of the city, not just the well-known North Side sites," Johnson said. "If we see areas that don't have resources, [we hope] to work with the communities that are there to build those resources up," In September, the Chicago Community Trust awarded RAD Remedy a grant from their new LGBT Community Fund, which will help their citywide efforts, Johnson said.
RAD Remedy's nationwide team operates remotely and donates their time, Johnson said. And community representation is a priorityJohnson said RAD has consulted with sex workers and undocumented immigrants. "Any moment we can put who's actively engaged with those communities at the front and center, the better off we're going to be," Johnson said. "If people have ideas about features they want or pieces that are missing, we're absolutely willing to talk to people and see what we can do." Future plans include an educational zine series and a feature called "pop tags" where an experience can be filtered by the reporting client's self-identified background.
Recently, RAD Remedy launched a crowdfunding campaign on RocketHub, and they're also seeking volunteers. "If anyone happens to be a full-stack developer, or knows CSS or HTML, we're happy to have you. If someone has an hour for data entry, we're happy to have you. Whether it's a consistent commitment, or it's a one-time house party that benefits us, any of those things really make a difference," Johnson said.
Although his organization networks on social media and at events like Dyke March, Johnson said he measures success in terms of "one-on-one rigorous connection." He was touched by using RAD's resources to assist a downstate transwoman who needed an orchiectomy to help her seizure medication workbut her insurance wouldn't cover the surgery. "Now she's both seizure free and can be the woman she is. For me, success looks like people getting what they need," he said.
Rad Remedy's website is www.radremedy.org, and its RocketHub page can be found at: bit.ly/radremedy.
RAD Remedy has announced its first crowdfunding campaign, aiming to raise $20,000 by Nov. 17. Visit www.radremedy.org/funding-campaign .