Ensuring equitable, inclusive and meaningful gender identity- and sexual orientation-related data collection in the healthcare sector: insights from a critical, pragmatic systematic review of the literature.

Abstract

In several countries, no gender identity- and sexual orientation-related data is routinely collected, if not for specific health or administrative/social purposes. Implementing and ensuring equitable and inclusive socio-demographic data collection is of paramount importance, given that the LGBTI community suffers from a disproportionate burden in terms of both communicable and non-communicable diseases. To the best of the authors' knowledge, there exists no systematic review addressing the methods that can be implemented in capturing gender identity- and sexual orientation-related data in the healthcare sector. A systematic literature review was conducted for filling in this gap of knowledge. Twenty-three articles were retained and analysed: two focussed on self-reported data, two on structured/semi-structured data, seven on text-mining, natural language processing, and other emerging artificial intelligence-based techniques, two on challenges in capturing sexual and gender-diverse populations, eight on the willingness to disclose gender identity and sexual orientation, and, finally, two on integrating structured and unstructured data. Our systematic literature review found that, despite the importance of collecting gender identity- and sexual orientation-related data and its increasing societal acceptance from the LGBTI community, several issues have to be addressed yet. Transgender, non-binary identities, and also intersex individuals remain often invisible and marginalized. In the last decades, there has been an increasing adoption of structured data. However, exploiting unstructured data seems to overperform in identifying LGBTI members, especially integrating structured and unstructured data. Self-declared/self-perceived/self-disclosed definitions, while being respectful of one's perception, may not completely be aligned with sexual behaviours and activities. Incorporating different levels of information (biological, socio-demographic, behavioural, and clinical) would enable overcoming this pitfall. A shift from a rigid/static nomenclature towards a more nuanced, dynamic, 'fuzzy' concept of a 'computable phenotype' has been proposed in the literature to capture the complexity of sexual identities and trajectories. On the other hand, excessive fragmentation has to be avoided considering that: (i) a full list of options including all gender identities and sexual orientations will never be available; (ii) these options should be easily understood by the general population, and (iii) these options should be consistent in such a way that can be compared among various studies and surveys. Only in this way, data collection can be clinically meaningful: that is to say, to impact clinical outcomes at the individual and population level, and to promote further research in the field.