Addressing the Complexities of Self-Reporting of Data for LGBTQ+ Patients

There can be considerable sensitivity for many patients around the self-reporting of data. Among the communities for which that is a factor is the LGBTQ+ (lesbian, gay, bisexual, transgender and queer) community, whose members have historically experienced discrimination and marginalization around identity issues.

Indeed, the LGBTQ+ population has lower rates of preventive care, and many community members report feeling uncomfortable sharing certain aspects of their health with primary care providers. In Long Beach, California, The CARE Center at Dignity Health-St. Mary Medical Center, a leader in LGBTQ+ healthcare, has helped address these barriers by giving patients the ability to digitally share their own data, including SOGI (sexual orientation- and gender identity-related) information.

By implementing self-reported data tools through their partnership with Phreesia, a Wilmington, Del.-based company that provides platforms for patient-facing support tools, , The CARE Center has digitally collected more than 11,500 patient reported outcomes. The ability to collect critical information from patients helps drive positive health outcomes. This includes being able to identify special needs or high-risk factors among LGBTQ+ patients, such as those experiencing depression or isolation. Having this information has successfully helped The CARE Center remove barriers and address differences in care for their LGBTQ+ patients.

Recently, Healthcare Innovation Editor-in-Chief Mark Hagland interviewed Paul Lovely, executive director of The CARE Center, to discuss ways in in which patient-reported data and SOGI-related data collection is improving accessibility and providing quality care for LGBTQ+ individuals. Below are excerpts from their interview.

Tell me a bit about the history of The CARE Center?

The CARE Center has been here since 1986, and it was started by a social worker who worked in the St. Mary emergency room. Here in Long Beach, there were many young men in their 30s and 40s, coming in extremely sick with AIDS. There were no real services to speak of, in the immediate are, and no real services. So Jennifer Andrews saw a tremendous need for these men and their partners needing healthcare. So she wrote a grant, and at first, it was just services to refer men to hospitals that would take them, to hospice care, to different social services, food, etc. The Care Center grew from there; we started out with case management services; then in 1995, we opened a medical clinic; in 1999, we opened a dental clinic; and in the ongoing years, we added a biomedical clinic, and added PrEP [Pre-Exposure Prophylaxis], for folks who are HIV- but who are at high risk; it’s a prevention injection. It’s taking one pill once a day and over 99-percent effective at preventing HIV infection. And our HIV-positive patients take PrEP also.

And that biomedical prevention space is growing for us. It’s a great way that we can not only help individuals avoid getting infected with HIV, but if we’re talking about getting to the end of HIV/AIDS, which is an achievable goal, even without a vaccine, one of the key tools is PrEP. We can pretty realistically look at ending the epidemic within ten years or so.

Tell me about the scope of your services?

CARE is the largest provider of HIV services here in south Los Angeles County; we have about 2,100 patients; 1,600 are HIV-positive patients; about 400 are PREP patients or people who see us for STD health, such as syphilis, which is pretty rampant in our community. We also have a fairly large emergency room screening program, so that people who come to the ER, they get tested routinely for HIV, hep C, chlamydia, and gonorrhea, and we have people who can treat them quickly. There are a lot of people for whom the emergency room is their only venue for medical care; they wouldn’t get tested otherwise.

So this is all about the sensitive, caring intake of patients, then, correct?

That’s exactly right: using technology like Phreesia and pre-visit questionnaires, helps patients share sensitive information. Sexual orientation, gender identity, preferred names. Also, if they’re coming for STD services or PrEP, there are sexual history questions that are important to ask, and those can be sensitive, too. So some of those elements are in the pre-visit questionnaire, so they can be completed on their phone before they get to the office. Or if they arrive here, we can give them a tablet to complete the form. And our intake people are super-sensitive and they put people at ease, but you’re right, you start with intake, and it can be awkward. And people can be more honest; and it helps with the providers’ level of comfort, especially out in the community. Some community-based providers, they’re not necessarily homophobic, but doctors generally aren’t super-comfortable or well-trained talking about sexual history questions, for example. So this way, they have that information in front of them. And everybody’s more at ease.

The other thing about pre-visit questionnaires is consistency with elements like depression screening. We do depression screenings at least once every three months; with behavioral care patients, we do it every time. And that’s something else that’s on the pre-visit form. So then it’s there, and it might pop up. Maybe you’re having some problems with depression or something else; having that screen done consistently will flag the provider, who can refer them to one of the behavioral health folks.

How long have you been at The CARE Center?

I’ve been here for 25 years; I’ve had pretty much every job at The CARE Center. My first job was helping patient organize their medications in their pill trays and providing medication education. Seven years ago, I became ED.

What remain the biggest challenges for you and your colleagues?

They’re the biggest challenges in our community—homelessness, people being unhoused; mental or behavioral health issues and the need for resources. Another area, per our HIV-positive patients, who are aging: long-term, they have all the same medical issues we have—cardiovascular and cancer risk, and metabolic issues, but more so. HIV-positive people have a higher risk of cancer and of metabolic syndrome.

And here in L.A. County, most folks have MediCal eligibility [MediCal is the name for the Medicaid program in the state of California], but it’s hard to get them seen sometimes by specialists; that’s always a challenge, timely referrals. And helping our patients with social isolation: older HIV-positive patients are alone a lot and might not have enough support at home or opportunities for social interaction.

There’s also the ongoing substance abuse issue: primarily crystal meth among gay men. We do see some fentanyl. But crystal meth destroys people’s lives; so that’s a challenge. But the best thing is that, when people come here, they’re coming because they need to get medication for HIV, but we can not only care for their HIV, but also help them get on top of other situations. We have a lot of success stories where people tell us, you’ve saved my life, you’re my home, you’re family. That’s pretty cool.

What do the next few years look like for you and your colleagues?

Some continued growth in our services, and more behavioral health services. And we’re teaming up with an FQHC [federally qualified health center], and we’ll have in our building two doctors who specialize in medically assistive substance abuse treatment. We’ll be growing in that way, and we’re also enlarging our dental clinic. We came into a new, $2.3-million home a few years ago, an awesome facility, which brought all our services into one facility.

Meanwhile, in terms of the health of our community, we have these long-term injectables now, including PREP, but within the next year or so, we’ll have new drugs that will only need to be injected once every six months. So treatment needs to be refined; and we’ll be giving patients more choices and more tools in order to help patients stay adherent with their medications and in some cases, preventing infection in the first place. It continues to be important for us to create a welcoming environment for the patient, to create a whole-person environment. Having people feel comfortable when they walk through our doors is very important; we try to continue to focus on all that.