“I had difficulty trusting providers enough to seek the care that I needed. When my partner saw something unusual on my back and I had to try a new dermatologist, I had to be dragged kicking and screaming to his office,” says Scout, PhD, MA, executive director of the National LGBT Cancer Network. Learn more about the needs of LGBTQ patients and how you can help create a safe, inclusive space.
The mission of the National LGBT Cancer Network is to advocate for the needs of LGBTQI+ cancer survivors and educate researchers, lawmakers, and healthcare providers about how to create welcoming environments that make it safe for LGBTQI+ patients to seek cancer care. In recognition of Pride Month and the health disparities that affect members of the LGBTQI+ community, we spoke to the National LGBT Cancer Network’s Executive Director Scout, MA, PhD, about the intersection of the practice of oncology and the specific healthcare needs of the community members represented by his organization.
ACCCBuzz: Tell us about your organization and why it was formed.
Scout: LGBTQI+ communities are disproportionately affected by cancer. We focus on educating our own communities about our health disparities and how to eliminate them, and we educate the larger community about how to create a welcoming environment for LGBTQI+ patients. We teach providers how to ensure these patients feel comfortable enough with their practices to access services when needed.
ACCCBuzz: Why is there a need for an advocacy group specifically for LGBTQI+ patients with cancer?
Scout: The past few years have been the worst yet in terms of attacks on the LGBTQI+ community and rolling back the progress our community has achieved. Recent legal setbacks mean that we don’t have the reassurance of the protections we previously had, and more people are getting away with refusing healthcare services to LGBTQI+ patients. These recent trends put the onus on providers to show that they support our community. Saying that you “treat everyone the same” is the same as saying, “I don’t see race.” You have to do something that shows us we will be safe seeking care from you.
I myself had difficulty trusting providers enough to seek the care that I needed. When my partner saw something unusual on my back and I had to try a new dermatologist, I had to be dragged kicking and screaming into his office. I had no assurances that it was a safe place, particularly for a trans person. I am privileged in that I had several doctors to choose from, but what is the experience of people who are limited in their choices due to their location or insurance status?
ACCCBuzz: What can providers do to create a safe space for LGBTQI+ patients?
Scout: Training is a large part of our mission. Our training teaches providers that our population lives with a legacy of health disparities, and, as a result, we come to providers with an established set of concerns, worries, and fears. We want providers to show us that they have a safe space for us to be treated.
Members of the LGBTQI+ community have real reasons not to seek care. Our organization teaches providers that making a safe space starts with being visually welcoming to our community. Practices should look at their office walls, their logos, their web pages and consider how LGBTQI+ patients may see these. This is more visible during Pride Month, during which many companies choose to temporarily incorporate rainbows into their logos. Our organization is noticing and tracking which companies are doing so.
Other actions providers can take include having a nondiscrimination statement. Is gender identity specifically listed in that statement? Does the provider have an online presence that indicates support for LGBTQI+ patients? Are there visible signs of welcome to the LGBTQI+ community in the office? Is the provider collecting our data on intake forms? Is that data being entered into their EHR? It will be a huge advancement for our community when all providers automatically collect our data in their EHRs. It will mean the end of the invisibility of queer people in health data. We will not have a cancer registry for our community until that happens. Currently, our data is limited to information about survivors.
One of the best practices providers can adopt to make LGBTQI+ patients feel comfortable and safe accessing cancer care is to establish an internal expert group composed of their own staff members, and back that up with an outside advisory group. Creating that buy-in among staff shows a long-term commitment to change.
ACCCBuzz: What does Pride Month mean to your organization?
Scout: It’s an order of magnitude bigger this year. There is more demand for our services. It’s great, but also exhausting. Pride Month gives us an opportunity to see the change in how many organizations are trying to make themselves accountable to our community. Pride Month has become much more mainstream. Many people outside our community now hang flags to publicly show their support. Of course, many people observe that using a rainbow logo once a year may be the only time a corporation shows support for the queer community. But at least it’s a sign that in the professional world there is an increasing acknowledgement that it’s not acceptable to be neutral about LGBTQI+ rights.
ACCCBuzz: Tell me about the OUT National Cancer Survey. Can you share any preliminary results?
Scout: OUT:The National Cancer Survey is a survey for LGBTQI+ cancer survivors who are invited to share their experiences with cancer. With more than 2,700 respondents (I was hoping for 600; my expectations were far exceeded), it is the largest LGBTQI+ cancer survey ever conducted. On June 30, we will release the results of the survey during a free online event.
Many survey respondents reported being able to access welcoming cancer care, although that’s not always the case for everyone. Gender expansive individuals and people of color feel less welcome. Also, although it is improving, there is still lots of room for acceptance of patients’ support teams. Sometimes, these people are not welcome in hospitals to be with their loved ones. Respondents also indicated their desire for medical resources that are tailored for LGBTQI+ patients. They say that it is very difficult to locate welcoming oncologists, support groups, or information about them.
The Center for Black Equity is our lead partner in conducting the OUT survey. By promoting the survey to their communities, we were able to collect the experiences of a significant number of Black and Brown LGBTQI+ people with cancer. We will release our findings about this community during our presentation.
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To be among the first to access the results of the OUT National Cancer Survey, join Scout, the National LGBT Cancer Network, the survey team, cancer survivors, and community members June 30, 2021 at 5pm ET.
Scout is the executive director of the National LGBT Cancer Network and the principal investigator of the CDC-funded LGBTQ tobacco-related cancer disparity network and OUT: The National Cancer Survey. He spends much of his time providing technical assistance for tobacco- and cancer-focused agencies, expanding their reach and engagement LGBTQI+ populations. Scout has a long history in health policy analysis and a particular interest in expanding LGBTQI+ surveillance and research. He has faculty appointments at both Brown University and Boston University Schools of Public Health. He is a member of the NIH Council of Councils, is the co-chair of the NIH Sexual and Gender Minority Research Office Work Group, is on the advisory panel for NIH’s All of Us initiative, and is a U.S. Pharmacopeial Convention delegate. His work has won him recognition from the U.S. House of Representatives, two state governments, and many city governments. Scout is an openly transgender father of three, a vegetarian, an avid hiker, and a runner.
