Project 812 | Co-producing an effective question set to record sexual orientation and gender identity in primary care research: a focus group with LGBTQ+ people

The current problem: in the UK, 1 in 2 people are diagnosed with cancer in their lifetime. Primary care is crucial for cancer detection, with over half of diagnoses made following general practitioner (GP) referral to hospitals. Cancer can affect anyone. The perspectives of diverse groups should be considered to improve research quality that maximises impact, but some groups remain under-served. This includes the LGBTQ+ community, where a lack of data collection on sexuality/gender means research applicability in this group largely remains unknown and researchers remain unaware of how many LGBTQ+ people they are reaching.

Our recent project: we attended 4 Pride festivals and spoke with 285 LGBTQ+ people about primary care cancer research. When we asked LGBTQ+ people if research studies should collect information on their sexuality and gender, like how we collect age and other details, 207 people (around 7 in every 10 we spoke with) answered yes and many added that LGBTQ+ people should self-describe. However, the appropriate way to ask for this information in research, such as communication strategies and question wording, is unknown.

Our goal: to co-produce an inclusive and LGBTQ+-friendly question set that for research studies to record a person’s sexuality and gender.

What we will do: we will run a face-to-face workshop with 10-20 diverse LGBTQ+ members of the public. First, we will invite those who expressed interest in participating in our research at Pride (their email addresses are available). The OUTpatients cancer charity will encourage LGBTQ+ people in their networks to participate. We will invite two clinicians to attend to explore how conversations around sexuality and gender could look in the clinical workplace, where research participants are usually recruited. Our workshop will first set some ground rules on friendly working. Then, we will present findings from our Pride project to set the scene. We will then perform a prioritisation exercise for LGBTQ+ people to brainstorm question designs and then collectively agree which is the most inclusive, acceptable to LGBTQ+ people, and helpful for researchers. The workshop will be 1.5 hours long. We will keep a list of individuals who participated in the workshop for subsequent contact, such as to share outputs and further involvement opportunities. Our research team is experienced in effectively conducting workshops and engaging with the public, including LGBTQ+ groups. An online follow-up meeting will be arranged to get approval from the LGBTQ+ people who were involved.

Sharing findings: we will share findings with the LGBTQ+ community. A Transgender social media influencer in our networks will share outputs on social media. We will publish findings in a scientific journal and present at conferences. We will pilot the agreed question set in a large-scale research study and share lessons learnt with the research and LGBTQ+ communities. The OUTpatients charity will share findings among their channels.

Timelines: 12 months allows time to arrange workshop materials (month 1-2), open for registration (month 3), conduct the workshop (month 4), review findings and online follow-up (month 5-8), and prepare dissemination materials (month 9-12).