Building Conversations Around Patient Identity

A young woman in a medical gown sits on an exam table, head down, visibly nervous as her fingers worry over a rainbow array of beaded bracelets. A physician enters the exam room, clipboard in hand, and greets her. The doctor, pressed for time on a busy day, looks at the patient then at her clipboard and ventures “Michael…?” before deferring to the name written in the margins of the form: Maysie. The young woman warily—and wearily—explains that her insurance is under the former name, but that her name is Maysie. Within seconds, and without any ill will, harm is done.

This scenario is depicted in Beyond Labels: Personalize Care Conversations, 1 of 3 vignettes featured in the Association of Cancer Care Centers's (ACCC) Personalizing Care Video Series. It uses dramatization to reflect real-world experiences often observed in the care setting. The patient-provider interaction portrayed in this video represents the missed opportunities for building trust and rapport that transgender patients and other members of LGBTQI+ communities regularly encounter in health care settings.

Promoting Health Equity

Although recent breakthroughs in precision medicine, genomics, and targeted immunotherapies have yielded a steady decline in overall cancer mortality rates, distribution of that progress has not been equitable. LGBTQI+ patients experience significant disparities across the cancer care continuum, from increased cancer risk to end-of-life care, highlighting the need for personalized care, as this ACCC Executive Summary details.

Diagnosis of breast cancer at later stages and at younger ages as well as increased psychological distress and sexual dysfunction following treatment for prostate cancer, are just 2 examples of inequities experienced by sexual and gender minority (SGM) populations relative to their heterosexual/cisgender counterparts. The National Institutes of Health has declared SGM populations—which include LGBTQI+ patients and those whose gender identity differs from their sex assigned at birth—as a population subject to health disparities, with a groundswell of national organizations calling for increased attention to these communities in cancer care.

In a 2022 ACCC comprehensive patient and provider survey, approximately 20% of patients reported they were unsatisfied with their care and did not feel like their providers understood their background. Feeling unseen or having core parts of their lived experience or background go unacknowledged, whether racial, ethnic, cultural, gender, or sexual identity, perpetuates health disparities rooted in implicit bias for this substantial cohort of patients. The ACCC survey that unearthed these findings was part of a larger initiative—Personalizing Care for Patients of All Backgrounds—to explore how well care teams identify and honor patients’ goals and preferences. ACCC partnered with the Virginia Mae King Foundation, SHARE Cancer Support, the Latino Cancer Institute, Cancer Support Community, Stupid Cancer on this project, which is supported by Pfizer Oncology.

The patient and provider study revealed that important conversations related to topics such as insurance coverage and finances, transportation, and caregiver support take place. However, as this infographic shows, just 32% of providers reported initiating conversations about racial and cultural identity or religious considerations, and only 28% discussed sexual identity with patients. Even fewer providers surveyed (26%) talked to patients about cultural norms.

Providers can build conversations and care around a patient’s identity by doing the following:

• Consider what makes each patient unique
• Ask about patients’ pronouns, languages, and preferred names, and document this information for the care team to reference
• Identify any personal circumstances that might impact care and decision-making
• Offer additional resources for support beyond the visit  

Later in the video, as the provider discusses exam results with the patient, she notes in the chart how Maysie prefers to talk about her body to try to prevent the patient from having to defend or explain her gender identity in future care conversations. Other providers can create a similar safe space for patients by incorporating an intake form like the one included in this 2019 Oncology Issues article. The article includes a table with basic gender identity terminology to enhance cultural competence for health care providers who may have limited experience caring for transgender patients, recommendations to improve communication with LGBTQI+ patients, and much more. ACCC has also curated a resource library of nationally available publications, tools, videos, and other relevant assets to help multidisciplinary care teams identify and address implicit bias and health care injustice.

The video concludes with a key sentiment many health care workers can relate to, “All the information is not on the clipboard. Sometimes we are informed by just listening and being able to relate to every patient. I think it’s the most important part of our jobs if I’m being honest.”

To view the full video series and for more tools and resources to help providers personalize care for patients of all backgrounds, please visit the website. 

Funding and support for ACCC’s Personalizing Care for Patients of All Backgrounds education program is provided by Pfizer Oncology.