How Patient Engagement, Outreach Support Medication Adherence to PrEP

With the right combination of patient engagement, patient outreach, and medication adherence, Paul Lovely, the executive director at the CARE Center at Dignity Health, said it's completely realistic to tamp down on HIV.

“It's an achievable goal now, which is great, but part of that is having a critical mass of the number of people out in the community who are HIV negative on PrEP, or having some high impact HIV prevention,” said Lovely, whose clinic focuses on healthcare for the LGBTQ community and is housed as part of Dignity Health – St. Mary Medical Center.

“There are a lot of tools in the toolbox—getting tested, wearing a condom—which we've said forever but they’re not always the best or easiest options for folks,” Lovely told PatientEngagementHIT in a Zoom call. “PrEP really works well. And if we get a certain number of people on PrEP and can keep them engaged in care and keep them on their PrEP consistently, we can really work toward getting to zero new infections in the community.”

PrEP, or pre-exposure prophylaxis, is a treatment people can take to prevent HIV from either sex or injection drug use. Approved by the FDA in 2012, the medication has played a crucial role in ameliorating what once was a massive HIV crisis. Its counterpart, PEP (post-exposure prophylaxis), is a pill that can prevent HIV after an individual has had a high-risk sexual encounter.

Between PrEP, PEP, and antivirals that keep the HIV virus at bay, Lovely said it’s completely possible to put a lid on HIV. That process sounds simple: get HIV-negative people on PrEP and connected to PEP as soon as possible after a high-risk encounter, and keep HIV-positive people on their antivirals.

But as any healthcare provider knows, patient access to care, patient engagement, and strict medication adherence are all anything but simple.

Both PrEP and PEP, as well as a slate of other healthcare services, are available at the CARE Center, located in Long Beach in Southern California. Long Beach is home to not only a big LGBTQ community, but also a big multicultural and younger population who have unique needs when it comes to their healthcare. Racial health disparities are always at play, Lovely explained, as well as variable insurance coverage.

What’s more, the typical demographic of a patient seeking PrEP and PEP skews somewhat younger; the average age of a patient getting PrEP at the CARE Center is in the mid- to late-twenties, Lovely said. Younger patients can also be harder to engage, Lovely added, because they tend to have fewer chronic diseases and therefore see less of a need to access primary care and have less experience to gain health literacy.

So as Lovely and the team at the CARE Center work to contribute to the goal of zeroing out HIV, he said they need to be judicious in how they approach patient engagement and patient outreach.

The first piece of the puzzle is getting patients started on their PrEP regimens.

“We started in 2012 with the thought that a lot of potential patients or clients in the community didn't know about PrEP, and that was true in the beginning,” Lovely recalled. “But interestingly now, what we find is that where the lack of knowledge or willingness to help the people is among primary care physicians or providers.”

PCPs might not know about PrEP or feel comfortable administering it among their patients, Lovely added. And on the flip side, LGBTQ patients might feel uneasy seeking PrEP from their primary care clinicians.

Some data indicate that patients don’t always feel like their healthcare providers will be understanding of their sexual identities, especially if the patient identifies as transgender or non-binary. Some patients report having to teach their PCPs about their sexual identities, which could discourage those patients from seeking out sexual healthcare from their primary care providers.

The CARE Center is working to support primary care providers in the community through partnership and education, Lovely said. In collaboration with the Long Beach Health Department and the Long Beach LGBTQ Center, the CARE Center has committed to conducting educational sessions to help primary care providers understand the logistics of administering PrEP within their own clinics.

Even still, Lovely said there remains a role for clinics like the CARE Center for enabling a good patient experience and patient access to care.

“At a place like ours, we have a very welcoming environment, we go to great lengths to make people feel safe and welcomed,” he stated. “And to make sure that we do everything we can to make it doable for them to start on PrEP, stay on PrEP, and for HIV patients, of course, the same thing.”

That starts in the emergency department, where many of the CARE Center’s largely young and uninsured patients often go for certain medical services. Lovely said the ED, which is co-located in the same hospital as the CARE Center, is often the first stop for a patient experiencing STI symptoms or who has recently had a high-risk encounter.

All of the healthcare providers in the Dignity Health – St. Mary Medical Center emergency department are trained in screening for PrEP/PEP access and administration. Even when patients present in the ED without PEP needs, clinicians assure patients understand how they can get on PrEP and even directly route them to the CARE Center.

And for their part, Lovely and the CARE Center team make sure there are as few barriers in the way as possible for a patient seeking PEP, which is time-sensitive, and PrEP. For one thing, patients do not need to have insurance coverage in order to access PrEP for free, Lovely emphasized. The CARE Center also works to get patients their appointments right away with little to no wait.

“We prioritize those new patients and make sure we're not saying, ‘Oh, well, you can come in three weeks when we have an open appointment,’” Lovely noted. “We work to reduce those barriers and get people in because lots of studies and research have shown that—and this is true of positive people, getting them started on HIV meds or for PrEP—the sooner you get them in and get them on the medicine, the more likely they are to adhere.”

CARE Center staff can’t just cross their fingers and hope the adherence part will come, either. Lovely said in addition to a provider who prescribes PrEP and PEP to patients, the CARE Center has a PrEP navigator who is in charge of making sure people stick to their PrEP regimens.

Both of those roles have been aided by the use of patient outreach technology from Phreesia, Lovely added, in order to assure good staff workflows and thoughtful patient engagement.

“PrEP patients are also oftentimes in school or they're working,” Lovely said, alluding to the younger target demographic. “They're not disabled or retired. So, that means being able to communicate with them digitally via text. Text messaging is hugely important.”

That high level of patient engagement has become more essential in recent years, as medical innovation has streamlined the administration of PrEP.

Back in 2012, the first iterations of PrEP were daily pills, much like an oral birth control regimen, that people had to take every day. Those patients went into the clinic once every three months for check-ups, but if they missed that appointment the clinic could do a quick prescription refill to ensure continuity of care and medication adherence.

The daily pills are pretty easy, Lovely pointed out, and most patients can handle them. But there’s also a new PrEP injection that cuts out the daily medication management and that could more easily fit in patients’ lives. That injection has to be done by the CARE Center’s clinician with testing every two months. If the patient misses the appointment, it’s a bigger deal.

“With the shot, it's great because you only have to do it once every two months,” Lovely reiterated. “But you've got to come in; you can't do it on your own. And you've got to get those labs done. So then it becomes even more important to make sure that we keep them engaged and retained.”

When a patient misses a PrEP appointment, the CARE Center’s system automatically sends out a patient reminder text to reschedule the appointment. The PrEP navigator is also able to follow up with patients to re-educate them on the importance of medication adherence and to determine a convenient day to access care.

The patient outreach technology has been pretty helpful in making this happen. More than 90 percent of the CARE Center’s PrEP patients have had a visit within six months; the organization has also seen a 64 percent reduction in its no-show rate for patients who check in pre-visit.

The return on investment has been two-fold for the CARE Center; not only are patients set up for success, but the organization is having an easier time managing the grants on which it relies to provide service.

For one thing, the patient intake tool allows for patient pre-check-in, complete with the myriad forms patients have to fill out before an appointment. Because the CARE Center relies heavily on grants, it needs to capture more demographic information about patients to continue to qualify for funding programs. The technology makes it easier for patients to fill out and for the CARE Center to organize and report back to grant funders.

Better patient outreach also simply improves the CARE Center’s clinical quality metrics, Lovely said.

“Patient retention is just so key to showing the success of your program, especially when you have challenging patient populations like we do that might be marginally housed, that might have active substance abuse, active behavioral health issues,” Lovely concluded. “We’ve really got to show that we're on the ball and that we're actually seeing the patients and we're doing that.”