New Website Helps People Trying to Navigate Their PrEP Options
When people are looking for pre-exposure prophylaxis (PrEP) resources, they probably want to speak to someone in real time, not make a clinic appointment. Shannon Weber, M.S.W., may have a solution: PleasePrEPMe, an online chat service and provider search.
Weber, the director of the sexual health resource HIVE at the University of California-San Francisco, gave a presentation on PleasePrEPMe at the National HIV Prevention Conference in mid-March in Atlanta.
Her poster was called, "PrEP and PrEP Access is Challenging: Changing the Paradigm with Online Navigation Services." Terri Wilder, M.S.W., interviewed Weber about this innovative new prevention awareness tool.
Terri Wilder: Tell us about your poster, and tell us about what's happening. I know you always have lots of exciting things going on with your work.
Shannon Weber: The background is that we launched PleasePrEPMe in 2015 as the California PrEP provider directory. And it was searchable and location-responsive. We then worked with PrEP Locator to help build the national directory, and got our website also to have the national directory, and then built out resources for each of the 50 states.
And then from that, the question was: OK, now that we have all these amazing resources, are there people online who are not already connected with services who could use services, but they need help navigating this?
And so we've created this chat program. So you can come on PleasePrEPMe.org and chat with a trained navigator in English and Spanish. And we launched this with funds from California Department of Health, so it's California-specific, although we're getting ready to expand to Arizona.
TW: When you say that folks can go to this website and chat, who did you hire to chat? Are these folks who are on PrEP? Are they just folks that are really savvy, excited, activist kind of folks?
SW: We have the most amazing human on the planet personing our chat, and that is Charlie Romero. So, Charlie, they were one of the first PrEP navigators in California and came to us from Children's Hospital LA, an absolutely extraordinary human who has this profound ability to approach any chat with a lack of judgment and warm regard. You might question, "How do you do that in chat?"
But that's one of the things I'm so proud that we've been able to do. We've developed this sexual health coaching model, which we share on our poster here. And these are our values. How do we bring our values that we live in our life, or we might have in our workplace? How do we bring this to this online chat experience, so that someone who is not already connected with care can feel this human connection and develop trust and rapport, and that might help bridge them from the question that they have to a clinic where they can get the help that they need?
TW: Can you talk a little bit about the core values around your work?
SW: We are very sex positive. We believe sex is part of how we engage with each other, and how we express ourselves. And so we delight in whatever your desire is around sex. We are problem solvers. So, we don't already know the answer. We've got built out in our chat platform over 100 shortcuts that help us quickly answer people's questions. But if we don't know the answer, we love going after it and figuring it out. So, please come ask us hard questions.
We have a huge commitment to using really clear and truthful language. And this became so apparent when you're in that online space, and words -- those letters you type, the spaces between them, the words you write -- that's all you have to communicate, in a sense, who we are and how we want to connect with folks.
And so we've spent a lot of time in our shortcuts, and also analyzing our chats, really asking ourselves, "Are we using very clear and truthful language?"
We always engage with warm regard. We take a person-centered approach and follow the person's lead. We always rely on data and clinical best practices, though, and then have figured out ways to share information. When someone has a belief or assumption that doesn't line up with the facts or data, you know, finding ways with warm regard to engage and help share that information with them.
We meet people where they are on their journey. So people can come to us with questions. I think sometimes in the beginning we were like, "Oh, my gosh. We're going to get pills in hands." And, you know, people come on and ask questions. And maybe they're not there yet. And so, what is it like for us to leave aside our attachment to the outcome, and just be with you where you are on your journey?
And then we always are staying curious. One of the amazing experiences about doing chat is you can maybe guess where someone is coming from by where the link tells you they showed up, or the ad that was run. But the reality is, you don't see the person, and you don't know who they are. And it's a beautiful practice and experiment, just [being] profoundly curious about who's on the other side of that chat. And how are you going to engage with them in a way that they will want to stay connected and get the help that they came looking for?
TW: You have an actual kind of condensed example -- an example of an actual chats load that covers a lot of topics. Can you just kind of share with us this example of a chat?
SW: We had really built out well the PrEP piece. And then we were like, well, if we are really going to meet people where they're at, it can't be just PrEP. It has to be PEP; it has to be U=U [undetectable equals untransmittable], also. And we're building up better language around condoms and STDs [sexually transmitted diseases] and, you know, all the things.
So this is a chat that's about U=U. And the person comes in asking a question to get clarity about what U=U means. So our navigator shares the science behind it. And then the person asking for help asks, "Well, why might you need PrEP?"
So then our navigator helps to talk about individual choice and then reiterates that U=U works alone; PrEP works alone; but they can be combined, depending on your situation. And then talks about [how] different prevention methods can work well with different partners or different partnerships.
There is also a discussion of provider bias and misconceptions about U=U, which is a huge challenge for folks. So they might come on PleasePrEPMe and get educated about U=U. But taking that back to their provider is another thing -- an emotional discussion talking with the person about learning that their partner has HIV. And the person chatting with us has a lot of concerns about their partner living with HIV and the side effects of their medication, which -- we talk about that. We talk a lot about stigma.
And then it really ends in this beautiful way, where the person who came on to chat had this real affirmation that they can fight the ignorance and stigma that's in their family and their community with the information that they receive from chatting with the navigator.
TW: That's great. How many visitors have you had since you guys launched?
SW: We've had over 2,000 chats at this point.
TW: Great. And you're just for the folks in California. But you mentioned that other jurisdictions had reached out because they're interested in what you guys have created.
SW: Yeah. We have a contract with the State of Arizona, so we're expanding to Arizona next. And we're super interested in talking with other jurisdictions about offering this chat service to them. We can land our chat widget on other people's websites.
And I would say another thing that's coming next that we're going to be playing with is: Are there ways that we can automate a chatbot, so to speak? After taking 2,000 chats, we see some themes. And so there's some frequently asked questions, and frequent ways people ask those questions. So we're going to look at, can we automate some of the responses, so even when we're not there, live, 9 to 5, folks overnight could get some of their chats answered?
That's another way that we can decrease the cost and increase the access to information for people in other jurisdictions, as well.
TW: So what are the hours of operation to chat?
SW: We're 9 to 5, Monday through Friday. We've played with being open other hours, although visitors to the website can be very dependent on when you run ads. Like, we had a special campaign with Squirt [a hookup app]. So we worked on Saturday because that's, they said, the best time for their DMs [direct messages] to go out. So we're happy to do that as well. But generally that 9 to 5 has been what's worked.
TW: Do you have any demographics of your chatters?
SW: In the beginning, we had this whole survey. We were asking people, because we wanted to collect these demographics. Because we just really, really wanted to be able to show that we were able to serve people who were not already connected in care, and really impacting some of the disparities in the epidemic.
Well, people who come on chat want to chat anonymously. So they were not so pleased with all the questions that we had; feeling like they were being in a research study and whatnot. And so, because we do take that user-centered approach, we said, "Oh, yes. That doesn't feel very good, does it, when you come to ask me a question and I turn around and ask you 10?"
So we've had to dial quite a bit of that back. We do a follow-up survey and ask folks for some demographics. So we don't have the kind of demographics that we would like, with regard to race, ethnicity, age, for example -- gender, sexual orientation, or gender identity. We do have quite a bit of data about geographically where people are coming from. And that can be super helpful for targeting. If you have outbreaks in certain areas, or you have areas in which you haven't seen PrEP uptake that you need, you can target ads there, and then we can track and see if we get chats from those areas.
TW: Great. And if folks were interested in getting more information, how would they get more information?
SW: Email me or call me.