December 2, 2022
Prioritizing Person-Centered Care and Community Collaboration for Better LGBTQ+ Health
Associate Product Marketing ManagerTeckro
One of life’s great equalizers is a personal or peripheral experience of cancer. If you’re not a cancer survivor or current patient yourself, you’ll likely have lost someone to the disease or know of people who have. And yet for LGBTQ+ cancer patients, cancer care is anything but equal.
On a recent episode of the Totally Clinical podcast, Stewart O’Callaghan shared their personal experience of navigating not only the steep learning curve of being newly diagnosed with a life-changing disease, but doing so as a member of the LGBTQ+ community – a community consistently overlooked and underrepresented in healthcare and beyond.
The Cancer Care Gap
Stewart was diagnosed with a rare form of chronic leukemia in their late twenties and after adjusting to the news as best as could be expected, went searching for LGBTQ+ specific cancer support and guidance. There was nothing to be found, and Stewart shared that their initial years post-diagnosis was spent without support, and even being turned away from existing cancer patient groups and spaces.
Live Through This, of which Stewart is the CEO and Founder, is the only UK charity specifically for LGBTQ+ people affected by cancer, aiming to help patients, survivors, partners and caregivers feel welcome and supported in cancer services. With humble origins as a peer support coffee morning, Live Through This has steadily grown, mapping the cancer sector to better understand and meet the needs of the LGBTQ+ community and influence meaningful change across cancer care services – making them more inclusive and accessible.
Stewart expanded on the development of the charity, and how their personal experience provided them with insight into the unique barriers and inequities faced by LGBTQ+ cancer patients. Stewart witnessed powerful and nourishing community discussions but wasn’t content to stop there. Driven to ask questions around representation and understanding of the LGBTQ+ community across the cancer sector as well as the availability of services, Stewart wanted to help solve the problems people were bringing into peer support conversations and contribute to improved patient experience
Following their input to the discussion guide for a recent Teckro focus group around LGBTQ+ experiences in healthcare and clinical research, Stewart talked about the failure of research recruitment diversity quotas to center the patient. Recognizing the lived experience and identity of every individual is not only key to ensuring underrepresented communities feel safe and motivated to engage with clinical research, but also a unique data point that can inform and improve study outcomes, treatment efficacy, and the lives of community members.
While there is an increased awareness of the importance of diversity, equity, and inclusion in healthcare and clinical research – all initiatives are not made equal. Live Through This has worked with large organizations like royal societies and unions of certain health professions, as well as other charities and third sector groups to provide LGBTQ+ specific guidance on representation, inclusive language, and making space for community and advocacy group voices at decision tables. Stewart applauded the enthusiasm and authenticity of many collaborators but shared how those operating in this space must be driven by person-centered care and patient benefit to ensure their efforts aren’t just performative allyship.
In doing this work, Stewart has some personal experience of such tokenization, mentioning examples of hesitancy for a company to put their name or reputation alongside an LGBTQ+ community message, last minute changes to agreed content, and generalized “cold feet.” Stewart explained how this can lead to integrity and commitment being questioned and an erosion of trust. Stewart’s advice for anyone engaging with a community of specific interest such as the LGBTQ+ community, was to be intentional about the collaboration, see it through to the end, and respect the time and effort the community has put into the work – often for free.
They expanded on the fact that many people have a fear of “getting it wrong” when engaging with LGBTQ+ individuals. Stewart explained that if people are willing to listen, understand and acknowledge historical community experiences within healthcare and clinical research and genuinely embrace the idea of co-production - meaningful collaboration is possible. The focus should be to honor and center community priorities and bring community voices into planning and decision making, not just as a final sense check before publishing.
The Live Through This website provides more information about the work and services offered, as well as current campaigns. Anyone with questions or interest in working with the charity can also reach them on social @LTTCancer.
More on LGBTQ+ Equity and Inclusion
- Industry Report
Considerations for LGBTQ+ Inclusion in Clinical Research