The increasing importance of identifying lesbian, gay, bisexual and transgender (LGBT+) populations is a key driver in changes to demographic data collection in representative surveys of youth. While such population-based data are rare, Growing Up in Ireland (GUI), an Irish, government-funded, longitudinal survey, includes sexual orientation and gender identity (SOGI) measurements. This qualitative study responds to a query from the GUI study team and aims to identify how best to collect SOGI data in future waves of GUI. A university Human Research Ethics Committee granted approval for online consultations with LGBT+ youth (n = 6) with experiential expertise in policy making. The research is underpinned by rights-based public patient involvement (PPI) with recorded discussions, which were transcribed and imported into NVivo 12, generating the theme “recognition in research, policy and society”. This co-created article, with the LGBT+ young PPI Panel members, commends the inclusion of SOGI data in GUI and recommends changes in question placement and phrasing. Aligning with best practice, the PPI members provide a template for wording on consecutive sex and gender questions, expanded sexual orientation identity categories and maintaining the existing well-phrased transgender question from GUI. This offers potential to improve the quality of the SOGI data collected and the experience of those completing the questionnaire. These findings extend beyond GUI, with relevance for surveys with youth populations. This paper underscores the potential and benefits of participatory approaches to research with youth and views their role beyond simply as sources of data.
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