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Home  »   LGBT+Member Voice   »   Using healthcare data to improve the services and experiences of LGBT+ patients

Using healthcare data to improve the services and experiences of LGBT+ patients

In our latest member voice article, Community Pharmacist and Researcher, Charlotte Jones discusses the importance of monitoring LGBT+ identifiers to improve the services and experiences of LGBT+ patients.

Tue 4th June 2024 The PDA

Pride holds deep meaning for LGBT+ individuals, offering a chance to openly embrace and celebrate their identities. Yet, alongside this celebration, we’re acutely mindful of the healthcare inequalities the community faces. From hurdles in accessing vital services like sexual and reproductive healthcare to grappling with elevated rates of mental health issues and substance use, the journeys of our community are marked by challenges.

I’m a community pharmacist and researcher with experience in public health and implementation studies, and it’s from my projects using healthcare data that I’ve come to realise how important it is that our services are monitoring LGBT+ identifiers to allow for the improvement of services and experiences of LGBT+ patients. From my experience, there is a complete lack of sexual orientation, trans status, and gender identity recording in healthcare datasets available to researchers; our services are not doing enough.

The absence of sexual orientation, trans status, and gender identity in healthcare records obscures the true extent of our community’s healthcare inequalities. This gap hampers efforts to drive meaningful change where we lack the concrete evidence needed to advocate for better policies and practices. It’s also too late to understand or study how LGBT+ communities have been impacted by events over the years, for instance, now recovering and studying the impacts of the COVID-19 pandemic, we’re left in the dark about how many LGBT+ individuals were hospitalised or lost their lives. There are questions we have that we’ll never be able to answer, and it’s the stark knowledge gaps like these that highlight the urgency of inclusive data collection to accurately measure and address the healthcare needs of our community.

Some work has already been done to address this issue – in 2017, NHS England released The Sexual Orientation Monitoring Information Standard developed by the LGBT Foundation. This document advised services how they could appropriately collect and process information on sexual orientation in a consistent way, however its implementation has been inconsistent, with many everyday services opting not to use it, either due to lack of perceived relevance or a lack of resources. So, while efforts have been made to address the issue of data collection regarding sexual orientation, there’s still work to be done to ensure widespread adoption and implementation of such standards across healthcare services. It’s important to note that there is no national standard equivalent for trans status or gender identity.

Guidance from the LGBT Foundation, “If We’re Not Counted, We Don’t Count,” explains how there is much we can do as healthcare professionals to improve the experiences of LGBT+ patients. Avoiding making assumptions about a person’s gender, the gender of their partner, or how they identify, asking about sexual orientation and trans status routinely so it becomes normalised alongside routine questions about things such as age, ethnicity and disability, and improving visibility such as wearing rainbow lanyards or rainbow badges, putting up posters of LGBT+ organisations and having visible inclusion policies, can all help LGBT+ people feel more comfortable to disclose their LGBT+ identity.

You might wonder, “But what if patients choose not to disclose this information?” The 2018 UK National LGBT Survey revealed that 46% of cisgender participants hadn’t discussed their sexual orientation with healthcare providers in the year leading up to the survey. The majority of patients didn’t disclose their sexual orientation or identity as they felt it wasn’t relevant to their care.

It’s important for LGBT+ patients and all healthcare professionals to recognise the significance of monitoring service use among LGBT+ individuals as a means of improving services and experiences of patients. There are so many opportunities to further understand the inequalities LGBT+ patients face, as well as potentially discovering new ones, investigating intersectional inequalities (for example, the experiences of LGBT+ People of Colour), and understanding how LGBT+ communities interact with healthcare services. It’s only with this evidence that we can advocate for change.

It’s easy for me as a healthcare researcher to get excited by the potential for such data, and the impact it would have on research that could benefit LGBT+ lives; however, without a recognition for the need for change by healthcare professionals, policymakers, and patients, our experiences will remain invisible, unmeasurable, and unknown.

Let’s take Pride in our identities by advocating for comprehensive data monitoring and inclusive practices that truly reflect the diversity within the LGBT+ community. By ensuring accurate representation and understanding of our experiences, we empower ourselves and future generations to access healthcare services that are inclusive, responsive, and tailored to our unique needs. If we’re not counted, we don’t count.


By Charlotte Jones, Community Pharmacist and Researcher 

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