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Nothing About Us, Without Us

Nurse with patient
How nurse representation, innovation and empowerment are improving access and outcomes.
How nurse representation, innovation and empowerment are improving access and outcomes.

In celebration of Pride Month, Johnson & Johnson is honored to highlight nurse leaders who are reimagining care delivery and ensuring LBGTQ+ patients are able to access validating healthcare services without shame or discrimination. 

Dallas Ducar (she/her/hers) is the CEO of Transhealth Northampton in Western Massachusetts, a comprehensive trans healthcare center built to empower transgender, diverse adults, children and families. A researcher, educator, nurse, advocate and activist, she also serves on the faculties of Northeastern University of Virginia and Columbia University.

Dallas Ducar

What does it mean to receive healthcare with respect?

For some people, the answer can truly be life or death. The experience of medical discrimination can deter patients from seeking or returning for regular or urgent care, which creates a compounding effect of morbidity and mortality, particularly for transgender or gender-diverse individuals.

In contrast, affirming care is the practice of acknowledging people exactly as they are – whoever they are.

“It’s ensuring that people can be known, seen and understood for who they are,” Ducar said. “I believe this is a really profound expression of patient-centered care – it’s one that’s based on the human story, not on what the provider says healthcare should be, but based on the person.”

To hear directly from Ducar on affirming care, research and advocacy for the trans and gender-diverse community, tune in to the See You Now episode “Affirming Care.” Dallas describes the ripple and compounding effects of discrimination, the impact of legislation on telehealth, the role of community-based participatory action research, and the ways that nurse-led innovation can be the playbook for healthier experiences and outcomes for all of us.

Below are some key takeaways from that episode.

For trans patients, healthcare is more than the clinical

“When discrimination happens to one part of life, say in health care, and someone is unable to get access to health care, it compounds to other parts of life, to housing discrimination, to employment discrimination,” Ducar said. “It can really cause so many people to live in fear for their life.”

Affirming care is a model for healthcare broadly – all people deserve to be seen and cared for, but for individuals who have had to demand rights and respect, it’s a particularly meaningful and healing experience.

To be accepted and reflected in your care team is powerful, Dallas shares. “You don’t have to be seen as different. You don’t have to explain yourself. Instead, you can come in, just be able to breathe easy and be able to see yourself reflected in your providers...and you get to actually see that it is possible to live the life that you want to live.”

Nurses have the scope and skills to drive true transformation

As the strongest, most trusted, most populous health care workforce, nurses “really have the power to be able to change healthcare,” said Ducar. Improving outcomes, access and equity all connect back to removing barriers, and no provider is closer to the patient than the nurse. In empowering nurses to reimagine how care is delivered, and in fostering an environment of patient-centered care, nurses are able to practice at the top of their license and establish solutions for many of the roadblocks patients encounter.

Nothing About Us, Without Us 2 - Transhealth Northampton.jpeg

For the Transhealth team, the personal and professional values of justice, equity, and human dignity are the foundation of gender-affirming care. These same values also ensure nurses have the space, support, and resources they need to care for patients – and responsively serve their community. This autonomy and empowerment allows nurses to have more of a direct impact, which can relieve some aspects of nurse burnout associated with feeling powerless.

“Do we really mean burned out, or do we mean they were unable to affect change? I wanted to create a system where everyone was able to affect change and empower each other,” Ducar said.

Tech solutions have barriers, too

Through the COVID-19 pandemic, Transhealth focused on expanding telehealth access for trans and gender-diverse patients. Focus groups indicated a lack of access to reliable transportation was driving care deferrals and leading patients to visit providers who were not gender affirming, increasing their risk of experiencing medical discrimination.

The swift expansion of telehealth policies due to the pandemic vastly improved access for the 20,000 trans and gender-diverse patients in Transhealth’s service area – but as those temporary expansions expired, care access was once again restricted.

“This drastically has reduced the availability of care for our most marginalized,” Ducar says, specifically for trans patients and patients of color in rural settings.

It was a perfect illustration of how agile innovation has the power to drive transformative change but in order to scale in a fragmented healthcare system, programs and services must also be supported by regulation and reimbursement.

“It breaks my heart to think about folks that are just over the border in places like New Hampshire that...come from perhaps very rural and conservative areas, and Transhealth could very easily see them,” Ducar said. “But it’s because of these antiquated laws that we actually are unable to see patients that are closer to [us than our patients] in Boston. It doesn't make sense.”

Nothing about us, without us

Top of mind for Ducar is representation – hiring and partnering with individuals representative of the most vulnerable communities.

“If you can't find those staff, if you're having trouble hiring them, expand the hiring process. Invest more money in it. If that doesn't get you anything, then create scholarships,” she said. “Create systems within your own space to be able to lift people up.”

Ducar is also focused on establishing representation in research, too, creating a new way of studying that is ethical, informed and rooted in the trans and gender-diverse community.

“Essentially, nothing about us, without us,” Ducar says.

The value of representation is expansive – affirming healthcare services not only improve outcomes, but compound across patients’ lives – such as housing, employment, and beyond.

“Affirming care is being able to care for those complex, disparate, different parts of one's life,” she says. “In short, it’s what nurses do best. It's being holistic...[and] working to create a health care system that is responsive to one's identity versus having people try to respond and fit themselves into a health care system.”

For more, listen to and share the See You Now podcast.

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