Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2024

How do cancer clinical trials include people from diverse genders and sexual orientations? (#289)

Haryana M Dhillon 1 , Kerryn Drysdale 2 , Anthony KJ Smith 2 , kylie valentine 2 , Joanne M Shaw 1 , Kirsty Galpin 1 , Scott Walsberger 3 , Karen Price 3 , Celine Daignault 4 , Anna Hartley 4 , Lindsey Jasicki 4 , Maria Mury 4 , Bridget Haire 5 6
  1. Psycho-Oncology Cooperative Research Group, University of Sydney, NSW, Australia
  2. Centre for Social Research in Health, UNSW, Sydney, NSW, Australia
  3. ACON, Sydney, NSW, Australia
  4. Cancer Institute NSW, NSW Health, St Leonards, NSW, Australia
  5. Kirby Institute, UNSW, Randwick, NSW, Australia
  6. School of Population Health, Faculty of Medicine, UNSW, Randwick, NSW, Australia

Background: Cancer clinical trials collect participant demographic data. Data collection and reporting on gender identity and sexual orientation is limited.  

Study Aims: Document what is known about collection of gender and sexuality data in cancer clinical trials, current practices, and perceptions among health care professionals regarding barriers and facilitators to collecting this data. 

Methods: Our mixed methods study comprised two components:

i) Literature Review: Relevant peer-reviewed literature was identified by searching Proquest and Pubmed databases with consistent search parameters published between 1 January 2019 and 3 June 2024. Articles were screened, selected, and data extracted in EndNote and Excel by author 2.

ii) Qualitative interviews: Individuals (clinician, researcher, or other professional) with expertise in cancer clinical trials were recruited for structured interview within Australia. Interviews were conducted by two researchers experienced in qualitative research. Data will be analysed thematically, a sample of 5-10 individuals was determined pragmatically based on resources. 

Results:

  1. We identified six publications for inclusion; all had a connection to sexuality and gender inclusivity in cancer clinical trials. Articles assessed data collection of gender and sexuality (n=2); knowledge about the proactive inclusion or retrospective recognition of gender and sexuality in cancer research more broadly (n=2); and indirect relevance to gender and sexuality diverse inclusion in clinical cancer trials (n=2). Gender and sexuality definitions varied, often collapsed into one demographic group.
  2. Interviews are ongoing and will be completed by 30 September 2024. Preliminary analysis highlights the lack of training with respect to issues specific to LGBTQ+ participants, and no systematic collection of gender identity and sexual orientation data within cancer clinical trials.

Conclusions: Cancer clinical trialists need clear recommendations about how to collect gender identity and sexual orientation data, communication about why it is important, and training on how to incorporate its collection in cancer clinical trials.