Social accountability and improving care for sexual and gender diverse patients

Abstract

Social Accountability (SA) in healthcare includes understanding and responding to how social determinants affect patient health. Altruistic healthcare professionals can improve socially accountable patient care at the individual patient or family level (micro), the population or community level (meso), and/or provincial, federal, or international levels (macro). There is a well-established healthcare equity gap for Sexual and Gender Diverse (SGD) people affected by cancer. In this article, I discuss how SA has played a role in my career. As a SGD healthcare professional, I offer some personal examples of SA in action that have made a difference. For socially accountable healthcare professionals, there is almost always something to contribute to improve care, from the patient to the policy level.

Introduction

My identity as someone who is part of the Sexual and Gender Diverse (SGD) community has subtly, and not-so subtly, influenced my practice as a radiation therapist, educator, researcher, and health leader. Early in my career, my identity was a source of shame, and experiences of discrimination were not uncommon. Towards the end of my career, my identity is a source of strength and enables me to recognize and mobilize social accountability to improve cancer care for SGD patients and staff.

This article discusses the healthcare gap for SGD people affected by cancer, the concept of Social Accountability (SA), and how I began to perceive and respond to gaps in care for people like me. It is a personal story, but I hope it can provide some insight for readers to find value in their “otherness” and/or work towards improving patient care at any stage in their professional journey.

A word about language

I use the terms sexual and gender diverse and queer as umbrella terms to describe individuals who are two-spirit, lesbian, gay, bisexual, transgender, intersex, and non-binary or who exhibit attractions or behaviours that do not align with heterosexual or traditional gender norms. I am a White, able-bodied, cis-gender, lesbian, healthcare professional and can only speak from my position of relative privilege. However, I recognize that many people in the queer community have differing experiences, especially those with intersecting social identities that compound sources of oppression.

Background

SGD people experience social conditions or determinants that affect healthcare access, engagement, and outcomes. ¹ These conditions include stigma, discrimination, as well as heteronormative and cisnormative assumptions. ² When accessing cancer care, SGD people often encounter or anticipate discrimination and may present with a later stage diagnosis, be less satisfied with care, and experience increased psychological distress.^3-6 SGD patients and carers may subsequently engage with healthcare professionals who lack education about their needs and have difficulty accessing tailored supports and resources. ⁷

Altruism, or an intrinsic motivation to improve the health and well-being of others, is a key component of healthcare professionalism. ⁸ On a broader scale, social accountability describes understanding and responding to how social determinants affect patient health in order to improve care. Socially accountable healthcare is accessible to everyone. This includes at the individual patient or family level (micro), the population or community level (meso), and/or provincial, federal, or international levels (macro). ⁹ SA in medicine has been a long established priority. It is defined by the World Health Organization as “the obligation [of medical schools] to direct their education, research and service activities towards addressing the priority health concerns of the community, region, and/or nation they have a mandate to serve.” ¹⁰

In nursing, SA or social responsibility is a core value of the profession, particularly in the area of health equity. SA is embedded in many nursing professional scopes, standards, and educational curricula. ¹¹ For my profession (radiation therapy), there is a relative paucity of discussion on this topic. My national professional association, the Canadian Association of Medical Radiation Technologists (CAMRT), recently added SA to their strategic plan, pledging to “embody and promote the principles of social accountability within the medical radiation technology (MRT) profession.” ¹² However, there is no specific detail about what the definition is, or how it might be embodied in practice.

In my clinical practice, I encountered SGD patients and could see that occasionally they were treated differently. I felt a connection with them and wanted to make their experiences better. I discuss below how SA has played a role in my career and offer some examples of SA in action.

Micro level: Patients and carers

The heteronormative healthcare environment in the 1980s and 1990s was not particularly supportive for SGD staff who were encouraged to leave their identities (or “private lives”) at home. This was not the case if you were heterosexual, when small talk about spouses and children was encouraged. Shame has been described as “the emotional core of the experience of stigma,” ¹³ and my queerness was a source of secret shame. I rarely came out at work at this time.

My first experience with SGD patients receiving radiation therapy was young men with AIDS who had Kaposi’s sarcoma. The media called it “the gay plague,” and we would wear gowns, masks, and gloves to treat them and ask them to come at the end of the day. Many patients did not disclose their queer identities; however, they had little choice but to be out. Sometimes during an intake consultation with a radiation oncologist, I would understand that the male “friend” sitting quietly next to the patient was their partner, although the doctor would not. In the early 1990s, I began to wear a small pink triangle pin on my lab coat to signal my queer identity. Patients would sometimes come out to me and there was always a sense of comfort on both sides.

Years later, I wrote about an encounter with a patient that brought home to me the significance of the need for better care (the name “Dr. Benson” is a pseudonym):

I met a gay patient last week. He had late stage lung cancer and was in a bad way, here for palliative treatment. He was with his partner, and they held hands through the consultation with Dr. Benson. She’s one of my favourites, takes her time, sits with them longer than the other radiation oncologists. I was there to take him away afterwards, to be x-rayed and marked up for treatment. Just before she left, she hugged him and his partner, handed over her card and told him to call her anytime.

When the door closed after her, he started crying. I pulled up a little stool on wheels and touched his hand. That was a shock was it, I said. No, he told me, I knew what was coming. Turned out, he was crying because Dr. Benson was the first doctor to treat him and his partner like a couple. They’d been mostly met with awkwardness and embarrassment, with a sprinkle of overt homophobia. His partner leaned forward; they’d have found this a lot sooner if they had not assumed he had AIDS. It had taken a number of negative blood tests, and lots of pushing to get them to look for other reasons for the weight loss and cough. Did they tell me all this because of my pink triangle pin? I don’t know. I cried on the bus on the way home, I wasn’t sure if it was sadness or fury. ¹⁴

I started looking for more support at work, for myself but also for patients. There wasn’t much. I went to a diversity fair and left with a leaflet from a religious group that explained how homosexuality was an offence against God. I had very little power at work and still felt shame in my identity. Although I wanted to make a difference for patients, I struggled to see how beyond the individual patient level. I did have a strong sense, however, that my being out had made a difference, and I wanted to explore that further.

Meso level: Policy and research

I moved from a clinical role into education, first as a clinical educator and later as a provincial professional practice leader. I also undertook further education, including a master’s degree with a research focus. With more professional experience and roles that allowed broader scope, I was able to expand my interest in SA. I found that research added validity to my lived experience and gave me more confidence that the care and support gap for SGD people in my field was a significant problem.

Speaking up in meetings and advocacy was still difficult. I felt vulnerable, for example, when colleagues questioned why we needed to expand gender options on intake forms, incorporate inclusive language, and diversify images in patient education materials. In a committee to design posters to advertise cancer support groups, I asked why all the images depicting women were highly feminine, with long hair and make-up. I was told “any of them could be gay” and that perhaps I was biased. As a result of that discussion, I volunteered for a photoshoot for new images for the campaign and I turned up looking as butch as possible! Shortly afterwards, I helped found the first SGD group for the provincial agency, which included patients from the community. We developed training materials for staff and began the long process of overhauling forms and procedures.

Twenty years after my encounter with the gay patient who had lung cancer, I was still very interested in exploring the factors that influence staff coming out at work. I was lucky enough to find a doctoral program in Educational Leadership and Policy at the University of British Colombia that had the flexibility to support a major research project closely tied to my interests and identity. I relished having the freedom to finally explore this issue in depth, and early coursework resulted in my first publication on the subject. ¹⁵ I also began to deliver national and international talks on the topic of improving cancer care for SGD people. To explain stigma and identities I would offer, “I am a lesbian” and the sense of vulnerability and lingering shame would make my voice quake. I would do it anyway.

Macro level: Education and support

I now work at the University of Alberta where I teach in an undergraduate radiation therapy program. My focus for the last few years has thus been on education rather than local policy change. Later in my career, I find myself able to leverage my accumulated professional privilege to help affect change, and importantly, I feel pride rather than shame in my SGD identity.

Most healthcare professionals lack undergraduate education on the needs of SGD patients. ¹⁶ After a curriculum review of our own 4-year radiation therapy program, we found that less than 5 hours of class time was dedicated to SGD healthcare; subsequently, much needed content was added for undergraduate students. ¹⁷ With the support of allies and other faculty with marginalized identities, we developed a “person-centred care” stream in an oncology course to address other areas that are lacking (e.g., care for immigrants and refugees undergoing radiation therapy).

To contribute to the continuing professional development of MRTs nationally, I led a group to develop a certificate course for CAMRT on cultural competency in the care of SGD patients. As the Editor-in Chief of the Journal of Medical Imaging and Radiation Sciences, I developed a new submission category (healthcare narratives) to open the journal up to diverse voices, both healthcare professionals and patients. For the first time, we are publishing impactful work on race and racism, SGD inclusive care, Indigenous experiences, and other intersectional professional issues. ¹⁸

In the last year of my doctorate, I applied for a Canadian Institute of Health Research (CIHR) grant with two other graduate students to develop a web site called Queering Cancer. ¹⁹ The web site, with associated social media and advocacy activities, has been successfully supporting patients and educating healthcare professionals for 3 years. A second CIHR grant in 2023 has recently allowed us to evaluate the impact of the organization, and it is gratifying to see we’ve made a positive difference in many patients’ cancer care experiences. It has also brought me full circle from my early clinical career, and working with patients again is deeply rewarding. Increasingly, the work I do closely aligns with my values, which is a rare gift.

Alongside Queering Cancer, I have continued to research and publish in the area of coming out.^14,20 A recent post-doctoral fellowship has extended the research scope to other oncology healthcare professionals. Advocating for better and more inclusive care for SGD patients goes hand-in-hand with improving the workplace experiences of SGD staff. Staff that are better supported and more out at work can also provide a sense of safety for their queer patients.

Conclusion

The growing focus on diversity, equity, and inclusion in the last few years has added weight to the discussion on health equity, making it hard to ignore the need to improve care and support for marginalized populations. Also, none of this work was done alone. Actions towards social accountability across all levels rely on collaboration. Allies, champions, and partners (professional and domestic) have taught me, worked with me, and cheered me on. Communities, relationships, and support make change possible.

As healthcare professionals, SA allows us to respond to the needs of our patients and communities “with whatever capacity we have and in whatever ways we can.” ²¹ This is especially true for those of us living with minoritized identities.

Social accountability can range from small and simple gestures to larger projects that involve more resources and depend on more substantial professional power and privilege (e.g., being in an established role or being in a leadership position). What you can do will vary, but there is almost always something you can contribute, from the patient to the policy level. As a healthcare leader, SA awareness, facilitation, and individual action can contribute towards closing the health inequities gap.