Putting LGBTQIA+ Service Users First: What we learnt from our queertech roundtableApril 26, 2023
The Health Innovation Network recently hosted a roundtable event bringing together leaders from the health and tech sectors to discuss the challenges and opportunities in designing health technology for the LGBTQIA+ community. Karla Richards, Innovation Project Manager at the HIN, writes about what we learned.
The potential of new technology to widen and improve access to healthcare can barely be overstated, but in a fast-moving world there is a tendency to create solutions which work for the “average” person, meaning minority groups with specific health or access needs can be overlooked.
This is particularly true for the highly diverse LGBTQIA+ community, which encompasses a broad range of identities and cuts across nearly all sections of society. If the tech sector mantra is “move fast and break things” then we need to ensure LGBTQIA+ people are included from the outset.
In March 2023 the Health Innovation Network hosted a roundtable event with leaders from the health and tech sectors with an interest in queertech to share learning and best practice in designing queer-focused services and overcoming the challenges faced by innovators in this sector.
Attendees from the NHS included senior leaders from trusts and integrated care boards, and representatives from local authority public health teams. We were also joined by representatives from the third sector, LGBTQIA+ mental wellbeing apps Kalda and Voda, and LVNDR Health, an LGBTQIA+ platform offering sexual healthcare and wellbeing services.
Here are some of the key themes to come out of the discussion:
1. Using language appropriately
The terminology around sexual orientation and gender identity is constantly evolving and there is no universally-accepted term for LGBTQIA+-focused technology - even the term queertech is off-putting to some. This can lead to a fear among some service providers of getting it wrong and causing offence, but there was recognition that this is a complex area, with a considerable degree of personal preference, and that it’s not possible to get it right all the time. Positive engagement with the community and person-centred service design is more important than getting the language exactly right.
2. The importance of data
Data is the lifeblood of the digital economy, and reliable, consistent, and thorough data allows services to precisely meet the needs of populations and improve efficiency. However, some patient management systems do not accommodate all identities, or produce errors when combinations of data are provided that don’t meet hetero or gender-normative standards. On occasion this can lead to individuals being refused access to the care they need without being misgendered or misrepresented on clinical systems; for example trans or non-binary individuals who may need to access gynaecological and breast care services.
Cyber-security is of course always essential, but an additional level of sensitivity is needed when asking about and storing information linked to sexual orientation and gender identity. However, this can also mean that data collected at sexual health services may be difficult to access for population health databases and that research linking specific health risks to sexual orientation or gender identity may be limited.
3. Queer services are not just for cisgender white men or sexual health care
When considering the needs of the LGBTQIA+ community, there is a tendency for health care commissioners to focus on cisgender white men and limit their considerations to sexual health services. This perpetuates stigma and stereotypes of sexual promiscuity amongst gay men and continues a lack of visibility and understanding of the unique health needs and experiences of the wider LGBTQIA+ community. When services are only designed for one part of the population this sends a message that other populations are not valued or welcomed in the health care system. This can discourage people from seeking out the care they need and exacerbate existing health disparities.
The only way to ensure services meet the full needs of LGBTQAI+ people is to ensure they are involved in iterative design of services from the start. This include reaching a broad spectrum of LGBTQIA+ people which cuts across other demographic groups to ensure specific needs are met.
Continued discrimination and phobia
Unfortunately, some participants had experience of institutional discrimination, in which their concerns are not taken seriously or adequately resourced by decision makers, leading to a lack of trust and disengagement from the community. Digital and technology solutions can create safe and inclusive spaces by allowing individuals to access care from the comfort of their own homes, connecting them with supportive communities, and offering resources that are tailored to their unique needs.
Concern about re-enforcing stereotypes
Another challenge is the need to examine specific issues (such as the higher levels of mental ill health and suicide across LGBTQIA+ people) without reinforcing stereotypes.
There was also concern that potentially effective digital solutions may be less likely to be commissioned due to fear of excluding those without the skills or resources to access them. While digital exclusion is an important consideration, this needs to be weighed against the benefits of designing services which can make service access quick and easy for the majority. Doing this can help free up resources and staff time for more complex cases through traditional pathways.
Current approaches to reporting and data often mean that people are either not given the opportunity to share information on their sexuality or gender or do not feel safe in doing so. This means the needs of the LGBTQIA+ community are not considered when designing or improving services.
6. Addressing queertech challenges benefits other groups
While the focus of the discussion was on improving services for LGBTQIA+ people, some of the issues discussed apply to other minority groups including lack of prioritisation from institutions and the need to involve end users in service design. Similarly, addressing concerns around data management can help people including refugees and those fleeing domestic violence.
I would like to thank everyone who came along to this event and participated in such a lively discussion. I have not been able to capture everything which was said here but this hopefully offers a taste of the challenges faced, and the enthusiasm which exists to help overcome them. There was consensus on the benefit of having a forum to share learning and an appetite to do more of this. As such we will continue to hold similar events in future and look forward to sharing our learning with you.