Community-generated solutions to cancer inequity: recommendations from transgender, non-binary and intersex people on improving cancer screening and care

OBJECTIVE: Transgender, non-binary and intersex people are less likely to receive appropriate cancer screening for their bodies and have a higher incidence of certain cancers than cisgender people. We aimed to elicit community-generated solutions to improve cancer screening for these populations. METHODS AND ANALYSIS: We conducted six online, asynchronous focus groups in English and Spanish with transgender, non-binary, intersex and cisgender participants who were at least 15 years of age from across the USA. Participants shared their experiences with cancer screening and related conversations with healthcare providers and recommendations for making screening practices more inclusive of their bodies and experiences. Focus group data were exported into transcripts and analysed with thematic analysis. RESULTS: The 23 participants represented a diversity of races, genders, sexualities, ages and geographical locations. Transgender, non-binary and intersex participants, particularly Black, Indigenous and/or people of colour, reported having to self-advocate to receive necessary care by initiating conversations about screening with their providers, requesting specific screenings and educating providers about the appropriate care for their body. Notably, no white or cisgender participants described having to request relevant screenings or initiate conversations with their providers. Participants recommended that forms ask about body parts and allow for self-identification. CONCLUSION: The ability to properly screen patients can have a direct impact on cancer outcomes. More inclusive intake forms may alleviate the need for transgender, non-binary and intersex patients to self-advocate to receive necessary care. More work should be done to educate providers on cancer risk for transgender, non-binary and intersex individuals.