Addressing the Challenges of Sensitively Collecting Data from LGBTQ Patients
As we noted in a report earlier this autumn, 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.
And that report involved an interview with Paul Lovely, executive director of The CARE Center at Dignity Health-St. Mary Medical Center in Long Beach, California, in which he shared ways in which patient-reported data and SOGI-related data collection is improving accessibility and providing quality care for LGBTQ+ individuals. Lovely and his colleagues at The Care Center have been partnering with the professionals at 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.
Per the work of the Phreesia team in partnering with the CARE Center professionals, Healthcare Innovation Editor-in-Chief Mark Hagland also interviewed Hilary Hatch, Ph.D., Phreesia’s chief clinical officer, about the challenges and opportunities involved in collecting and using SOGI (sexual orientation- and gender identity-related) data in order to improve patient outcomes. Below are experts from their interview.
How long has Phreesia been in existence? And how does it function?
The company was founded in 2005; it’s a publicly traded company. We’re most known for a digital check-in solution and are the leader in patient activation. We facilitate 150 million patient visits annually in healthcare organizations across 50 states. We’re making sure to make the patient experience easier, helping with scheduling appointments, prompting people to come in for preventive care, reminding people about medication refills, collecting demographic information, consent forms, copays, and providing patient education.
I oversee the clinical team: psychologists, nurses, and physicians, and we really think about how to use our operational platform to facilitate the needs of the clinical care team and how to make it better for patients. I joined Phreesia five years ago, at a time when the company was focused on collecting demographic data, copays, and consent forms. Then when providers asked us to manage the collection of certain types of clinical data, we needed to build a clinical team. And we’re experts at collecting SOGI data, while our partners at The Care Center at Dignity Health-St. Mary Medical Center are experts in caring for the LGBTQI+ community. A lot of groups have been thinking about how to do a better job of collecting social and demographic data, how to do that at scale, and make people welcome in a healthcare setting. We worked that together with The Care Center. And now a lot of groups are collecting this kind of data to inform their clinical care. Our platform is primarily used by providers, though we do have relationships as well with payers, life sciences, and government.
What are the biggest challenges in this area?
In fact, 77 percent of people do not have sexual orientation and gender identity data in their health records. It’s important data to understand the health needs of a patient. And there’s been such a history of avoiding care because of fear of stigma or discrimination.
Is part of the challenge mistrust of the data collector or the process?
Yes, that’s correct. When a patient walks in and someone asks them their sexual orientation or gender information—self-reporting digitally allows a person to decide how they self-identify. You also have the challenge that it is very hard to train staff at scale to do this and to get it right, with a population that has already felt turned off in healthcare. So one of the advantages of technology and digital platforms is that you can train the platform to do it the exact way you want, with the exact wording and timing, etc. It also gives people a chance to answer questions privately, usually on their mobile phones in advance of an appointment. We hear stories all the time about an uncomfortable staff member not knowing how to ask things or are filling things out without asking patients. It’s true not only of SOGI data but of race and ethnicity and SDOH data as well. Digital technology has an opportunity to get this right.
How does your clinical team work?
We figure out the best practices for collecting SOGI data, trying to determine a new kind of set of best practices for collecting SOGI data. Often, the way industry standards explain how data should be coded in the EHR [electronic health record], but don’t really tell you how to ask the question of the patient. How can you elicit the questions from the patient? To make sure the way the information is collected digitally will lead to good, high-quality data, and also provide a good patient experience. Until recently, we had male, female, other; and what could be more “othering” than walking into a clinic and being asked a question like that? So we work on SOGI, SDOH [social determinants of health], and depression screening questions.
And then we’ve worked with the Care Center on patient outreach related to preventive care like PrEP [Pre-Exposure Prophylaxis], for HIV. Patients who need to be brought in for that treatment, that’s a healthy population. And the Care Center, they came up during the HIV/AIDS crisis, and they had a lot of sick patients who desperately needed care, and therefore, they overcame their fear of interacting with the healthcare system because they were ill. With PrEP, you have a healthy population, and they have to take a preventive treatment on a preset schedule. So we helped the Care Center to manage that set of interactions. We found that within six months, more than 90 percent of the Care Center’s appropriate patients had come in for their PREP treatments.
And we do a lot of work in cancer screening, so we’re reminding people to get their mammograms, etc. In the LGBTQI+ community, when it comes to trans patients, clinicians are often uncomfortable talking about the patients’ organs. Imagine the discomfort asking SOGI patients, they feel even more uncomfortable talking with trans patients. How do you know whether to encourage a patient to get a pap smear if you don’t know whether they have a cervix or not? And I’m focusing on some of the very specific issues in this particular patient community; but this is more and more the case across healthcare as we get closer to personalized medicine. We need to deliver not only sensitive care, but also the appropriate treatment. There are more and more treatments available where you have to know a lot more about a person’s sexual orientation, gender identity, family history, demographics, in order to tailor care. So this isn’t just a concern for care organizations like the Care Center or many organizations across the country that treat community members, but also for life sciences companies trying to reach out to particular communities. It’s an example of a broader phenomenon.
The patient experience is still complicated for many patients, correct?
Yes, and we think about this as helping both patients and providers: if we’re collecting data in a sensitive way, and it’s well-tested at scale, providers don’t have to fumble their way through questions, and they know what to follow up on, and how. And there’s such an overwhelming amount of information and preventive care that providers are supposed to do. There’s a stat saying that if they provided all the preventive care needed, they’d be providing care 27 hours a day. And what’s more, when people are rushed, they’re just not going to deliver their best care. And while patients might hear about HIV screening, but they might not be providing the information on cancer screenings needed, etc.
And our EHRs are still basically gender-binary, correct?
Yes. There has been some movement in a positive direction in the last two or three years, but there’s a lot of work to do, and also work to be undone, where people feel uncomfortable outside these special high-density areas. But I do think it’s important to emphasize that if this were just an issue about SOGI data or about the LGBTQI+ community, we’d be missing that all of healthcare is moving in this direction, where you have to know a lot about a patient to be able to deliver some of the kinds of tailored treatments that are becoming available; so we have to be able to meet patients where they are know who they are.
What does the future of Phreesia look like? And the future overall in this area?
Phreesia has the privilege of working across so many different kinds of practices, getting this broad view, and getting expertise from a group like The Care Center. And we also work with a lot of innovative life sciences companies, who really want to figure out how to help to train them to discuss certain topics with certain patients. And it’s not only true with this community, but also in the oncology community, where you really have to know a lot about the patient. So we’re seeing changes in healthcare and also among life sciences community, where they’re learning how to educate patients independently of clinician visits, to figure out patients who might be ripe for a certain therapeutic.
