The Journey to Inclusive Care: Navigating LGBTQIA+ Experiences in Healthcare
By Hannah Dietz and Hannah Jew
Too often, who you are determines the care you get.
For the LGBTQIA+ community, navigating the healthcare system can mean facing bias, invisibility, or outright exclusion. These aren't new problems, but they are finally getting louder attention. As the industry begins to reckon with long-standing disparities, data becomes more than numbers. It becomes a lifeline—not just to understand the gaps, but to close them. At Syneos Health, we believe progress starts with listening, studying, and showing up—every month, not just in June.
The Current Landscape
We believe understanding patients starts with seeing them as people. That’s why we built the Empathy Engine—Syneos Health’s new proprietary consumer data hub with insights from over 3,500 people and caregivers across the US, representing more than 150 conditions. By exploring the mindsets, values, and behaviors behind health decisions, we gain the kind of deep human insight needed to truly connect—and drive change.
For the LGBTQIA+ community, our Empathy Engine data shows that health literacy, or how easily people understand information related to their healthcare, is lower than in the general population. In fact, 46% of the LGBTQIA+ community find it overwhelming to sift through the information they need to know about a condition. For the transgender community specifically, this number is even higher at 55%. Just over 30% of the LGBTQIA+ community agrees that doctors use words they don’t understand when discussing a new medication, compared to only 25% of the general population. That number jumps to 46% for the transgender community.
This is concerning because a lack of health literacy can profoundly affect how individuals navigate the healthcare system. If you’re not empowered to understand your own health, how can you effectively advocate for it?
To understand the complex interplay of factors that can lead to both a lower level of health literacy and, ultimately, a tarnished healthcare experience, we talked with LGBTQIA+ colleagues and allies across Syneos Health. They are all members of Syneos Health’s Definitions Not Applicable (DNA) employee resource group (ERG), dedicated to improving the experiences of Syneos Health colleagues around the globe who identify as LGBTQIA+ by creating more inclusive work environments while also educating and expanding the community of allies. Though their thoughts cannot represent the entire spectrum of the LGBTQIA+ experience, they reveal important truths about feeling marginalized within the healthcare system.
The Mental Health Crisis
Mental health stands out as a pressing concern within the LGBTQIA+ community. A Syneos Health employee who would prefer to remain anonymous shared his experience. "Mental health is definitely at the forefront for me. I can throw a stone and hit a friend who has had a conversation about some sort of mental illness or care they're undergoing," he shared, emphasizing the widespread mental health challenges in the community.
Our Empathy Engine data reveals that LGBTQIA+ individuals are significantly more likely to experience mental health challenges compared to their peers. Specifically, 63% of LGBTQIA+ individuals are concerned about their mental health and wellbeing, compared to 43% of the general population. 60% of the LGBTQIA+ population also report feeling burned out managing their condition.
Vincent Woolfolk, a Syneos Health employee, echoed these sentiments by sharing an anecdote about a close friend who has dealt with anxiety. “He has kind of given up with the medical system because he’s gone to multiple doctors to talk about [his anxiety] and has either been waived off as being overly dramatic or has just had a prescription thrown his way.”
Woolfolk's story is a stark and alarming illustration of a person desperately advocating for themselves, yet being dismissed by the very system meant to protect them. It is a poignant example of someone losing faith in that system. Though the experiences of this community can be difficult to confront, sharing them is crucial for driving genuine progress.
Skye Pavalko, another employee at Syneos Health, shared how past mental health care experiences led to avoidance. “I felt like therapists would see one-off traits of myself and come to a conclusion before we even had an initial session,” they said. “As you can imagine, that made me avoid things for a while.”
Eventually, Skye found affirming care—and with it, the ability to heal. “Now, I have a therapist who is queer-affirming and sees me as a whole person. She doesn’t need a glossary—I can just show up as myself.”
Navigating Through Mistrust
Feeling unheard in a system so complex yet so important for wellbeing can lead to mistrust. According to Empathy Engine, 38% of LGBTQIA+ people, and specifically 48% of transgender people, feel the healthcare system is biased against people like themselves.
Woolfolk explains his concern about these numbers. “It worries me that people don’t feel that level of confidence in dealing with their healthcare, but I also understand within our communities there can be a level of mistrust for medical providers and whether they have your best interests in mind.”
Lack of representation fuels this mistrust. Nonye Okafor, a Syneos Health employee and advocate for the LGBTQIA+ community, offers a contributing factor that leads to this disillusionment. “Existing health education materials often overlook LGBTQIA+ health needs, resulting in limited information being shared about relevant resources for preventative measures, treatment options, and managing conditions.”
Gioia Pagano echoed these sentiments through a deeply personal example: “I remember being in a very emotional space during a counseling session and having to stop to explain terminology related to my identity. It wasn’t just uncomfortable—it made me feel like I had to educate my provider just to be heard.” She added that these kinds of encounters have led her to develop a mental “checklist” before appointments, burdening her with the need to translate her own experience into a language her providers might understand.
The burden of self-advocacy can be exhausting. At times, it leads people to settle—8.2% of the LGBTQIA+ and 10.8% of the transgender communities would rather accept subpar treatment than seek a second opinion. That’s compared to only 5% of the general population. This shows how stressful it can be for people in this community to find a new treater who provides better care.
For those who do decide to seek out better treatment, what are they looking for? Woolfolk explains that he seeks out “someone who is up to date on current research around AIDS and HIV, sexually transmitted infection prevention, and has experience serving the LGBTQIA+ community. It's crucial that they have compassion and empathy for our experiences.”
Our data confirms that this sentiment is shared across the community. LGBTQIA+ individuals over index on wanting communication tailored to their preferences and healthcare providers who share their orientation or gender identity. This desire for tailored and empathetic care is further reflected in the finding that 85% value medical staff that are highly attentive to their needs and preferences.
Pavalko experienced firsthand how transformational affirming care can be after years of avoidance. “The office I go to now is amazing. They ask about your support system and what brings you joy—not just your symptoms,” they shared. “Every time I visit, they check in on my pronouns and update them immediately. No questions, no resistance.” This kind of care helped rebuild Pavalko’s trust: “It got to the point where, if I feel sick—or even just want to set a new wellness goal—I actually feel like I can get care. That used to feel impossible.”
The anonymous employee shared his positive experience with a healthcare provider who focused on LGBTQIA+ and minority health. "When I went to this HCP, they were specifically talking about how certain medications that I might take would impact Hispanic males. It was the first time I felt truly understood by a healthcare professional," he noted. Everyone deserves to feel seen and heard by their healthcare providers, yet it’s too often the rarity.
Trust shouldn’t be a luxury. Everyone deserves care that sees them fully—yet for too many, it remains the exception, not the norm.
Finding Community
Beyond the healthcare system, we found that many LGBTQIA+ people seek out community to connect and share their experiences. The population over indexes on social media engagement, with 42% being highly engaged compared to 29% of the general US population. LGBTQIA+ individuals are also more likely to follow health and wellness influencers and join groups to connect with others about shared health conditions.
As Woolfolk described, having a supportive community is invaluable. "Knowing there's a group where you won't be judged, where others get what you're going through, that can be a lifeline," he said. This sense of community and shared experience is vital for mental health and overall wellbeing.
The anonymous employee added that community can do more than feel supportive; it can help people find better care. "There are many groups on social media centered around LGBTQIA+ interests, like gay men who like to garden or go outdoors. These groups provide a sense of community and often discuss health-related topics, helping members find supportive healthcare providers."
Community can also be found in the workplace through organized groups like the DNA ERG. Pagano described the ERG as an essential part of her journey. “One of the first things I asked about when I started at Syneos Health was whether there was a LGBTQIA+ ERG. Having that space made it easier to share parts of my life—like planning my wedding—with colleagues. That level of workplace inclusion matters so much more than people realize.”
Woolfolk, an active member, explains the importance of these safe spaces in the workplace. “I think the role of these organizations is to be able to be inclusive of everyone who works there. This can be built in with things like word usage and organizations like the DNA ERG that allow not just community members but allies to connect with each other.”
Whether online, in person, or at work, finding community isn’t just meaningful—it’s essential. When people feel seen, supported, and connected, health conversations become more honest, and care becomes more human.
Looking Forward
As we move forward, it is crucial to listen to the voices within the LGBTQIA+ community, to understand their stories, and to address their needs with empathy and precision. But this is only the beginning. Bridging the gap in healthcare for LGBTQIA+ individuals requires a multi-faceted approach that includes education, policy changes, and community support. Only then can we hope to create a healthcare system that truly serves all, and values the full spectrum of sexual orientations and gender identities.
Though we as a healthcare organization cannot solve everything, it’s pertinent that we advance inclusion in the parts of the healthcare system that we can influence. This means driving clinical trial diversity by leveraging data and providing insights to achieve better health outcomes for all patients. It also means creating intentional inclusive communities inside of our walls, such as our DNA ERG.
By fostering a healthcare environment that is inclusive, affirming, and informed, we can make strides toward ensuring that every individual receives the care they need and deserve. It is not just about healthcare; it is about human dignity. For us, this work never ends.
Pagano offered a powerful reflection to end on: “Improving inclusion improves outcomes. I’ve seen what it looks like when friends lose access to care—and I’ve seen how things change when providers truly listen. The more access we create, the more lives we can impact. It really is that simple.”