December 2, 2022

Prioritizing Person-Centered Care and Community Collaboration for Better LGBTQ+ Health

Reading time

4 min read

Rachel Baldwin

Associate Product Marketing Manager

Teckro

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.

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HANNAH LIPPITT: Hello and welcome to the Totally Clinical podcast brought to you by Teckro. Totally Clinical is a deep dive into the freshest trends, big-time challenges and most excellent triumphs of clinical trials. I'm Hannah, your host. Join me as I chat with industry experts, trailblazers, thought leaders and, most importantly, the people benefiting from clinical research. So, tune in, settle back and don't touch that dial. It's time to get Totally Clinical.

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HANNAH LIPPITT: This week, I'm joined by Stewart O'Callaghan, founder and chief executive at

Live Through This, the UK's only charity that supports and advocates for LGBTQ+ people affected by cancer. Welcome to the Totally Clinical podcast Stewart, and thank you so much for joining me today. Could you start by explaining more about your background and journey as an LGBTQ+ patient navigating the medical system in both Europe and the UK?

STEWART O'CALLAGHAN: For me it was quite an interesting story, so I entered sort of my experience through the way that most people with blood cancers do, which was a lot of mystery around different blood tests and random symptoms. And at the time I was living in Berlin, so I was also trying to navigate a health care system that I didn't really grow up with. So, it took a bit of a while to get the diagnosis and in that time I made the decision to come back to England so I could have treatment in my usual structure that I was familiar with because I hadn't been in Berlin for that long. So, I went from being diagnosed and then within six months being back in England sort of re-acclimatizing to that system and in that whole process and the

sort of many years in between.

So, I have a chronic form of leukemia, so I've been under treatment for about six years at this point. And for many of those first formative years hadn't really seen any LGBT-specific support that I was after and that was online and in-person no matter how many cancer centers I went into or places I looked online and after a long time really of feeling like there were conversations that I still needed to have – that's how I started setting up the charity, which went from really an early, nascent idea of having a peer support coffee morning. And now it's just grown into this larger organization that supports patients all over the country and sometimes beyond, and also educates health care professionals to improve their ability to provide good care.

HANNAH LIPPITT: I know that you’ve really experienced challenges navigating the system. Could you explain more about this?

STEWART O'CALLAGHAN: Yeah, of course. So when I was first diagnosed, I think there's a lot of challenges about really almost understanding what it is to be a patient, especially with a chronic health condition. And then I think once you've sort of understood your disease and what the treatment plan is going to be, then you sort of almost have the mental headspace to start bringing in other parts of your life. For me, especially because this is a long-term thing, thinking about how it really aligns with my life and support I have and the people I have around me, this kind of stuff. And I think in Germany I was worried that I wasn't necessarily

going to have that ability to have that person-centered approach, mainly because I was worried about language and my support network there was much smaller – things like that – so coming back to England, I think I potentially had too high a hopes maybe or maybe not. I think the majority of people were able to find peer support groups that they relate to, but, I, wherever I went, didn't really find the specific things that I needed. So, being diagnosed quite young in my late twenties, having a very rare cancer, being queer, wanting that kind of support, there was just nowhere I really fit in and even when I went specifically asking for support or to join certain groups that I thought I might align with, I was always told “No” or told there was nothing there for me. So, I think for a while I took that somewhat, not personally, but it was a personal struggle and it really meant I went without any support for the first three or four years, I would say. And it wasn't until I ended up in psychological therapy to deal with all of that stuff that I realized there was actually a need for me to have these healthy conversations within my community about being a cancer patient. And the more I had started having those conversations, the more I realized that I had a unique experience and faced unique barriers but there were many other people in my community as well who had their own barriers and sometimes they converged on similar points and sometimes they were quite specific to their cancer or their identity. And I really wondered why there wasn't some better understanding in the health care sector about these issues, and if there was something I could do to really make these things more known.

HANNAH LIPPITT: So this lack of support led you, as you explained previously, to set up your charity, Live Through This. Could you explain a bit more about the goals and future ambitions?

STEWART O'CALLAGHAN: In the beginning, the goal was quite humble. It was just a space to have nourishing conversations with people with similar experiences. I think we started out with that simple goal and achieved it quite quickly in a way. I mean, there's more people I want us to be able to reach, but we absolutely started having these really powerful discussions

and these started to really lead into the idea of, “OK, well, it's all very well supporting patients, but how do we improve these issues, so that potentially they'll have less problems they're bringing into peer support?” So, you know, I think we'll always want to connect with each other, but we shouldn't have to connect through our traumas or these barriers we've had. So, it was from there that the charity started to really start to map the cancer sector and understand, “Well, why aren't we represented and why aren't there particular services available and what can be done to really change things for the better?” And for me personally, it was a bit of a learning curve because although I have science degrees, I left that world to tattoo for 10 years. So, coming back into it as a patient was quite an interesting challenge. In some ways it opened doors because people really, I think now more than ever, respect patient voice and they want to find ways to work with them in that way. But also I had to really learn the ropes of how to build a charity, how to work with health care, and how to get to that view of improving patient experience in quite a large system like the NHS.

HANNAH LIPPITT: Recently you were involved with Teckro’s report about recommendations around how to engage LGBTQ+ patients in clinical trials. One of the key findings was about how the community needs better representation in research that diversity quotas aren't enough. What are your thoughts on this?

STEWART O'CALLAGHAN: You sort of have the macro picture of, anytime we're doing research, we have to have a

population sample that's representative of the whole so that we can really generalize to the population. And this is the point of good representation in samples and studies, but also sometimes there can be specific things about “Do certain communities have different impacts, effects or responses to treatments?” – things like that that really got underreported. Only last weekend I was at the Black Women and Breast Cancer conference, organized by Dr. Georgette Oni, and the same conversations were happening. So, it's not like it's an LGBTIQ+ specific issue, it's really a minoritized person's issue – that the health care system and research in general overwhelmingly rely on the White sample and a certain person that they expect to engage. So, when you are not part of that, it's very easy sometimes for research to leave you behind. Things are changing slightly and there definitely is a small bit of improvement but it's also interesting from my experience of being potentially recruited to some of these studies as well in the past. So, when I was first diagnosed in Germany, I was offered a study straight off and then I was more recently offered one when I failed most of my mainline treatments and was offered an experimental treatment. But even in that process, it doesn't feel very person-centered. It doesn't often feel like they are welcoming or celebrating the parts of yourself. And much like the report said: sometimes a good recommendation to make it feel like it's hitting those points is really establishing and appreciating what that person's lived experience or identity brings to the study and what it can do for their community. I think a lot of people in our communities are sometimes wary of engaging in research or big sample sets or data collection, but when we really extol the benefit of what they can bring for their own community and improve things overall, I think that can be a really fantastic motivator that can improve the science and data that we ultimately get out of these studies.

HANNAH LIPPITT: In the report, there were also considerations of what inclusivity actually means. So, removing gendered language, sensitivity, including advocacy groups, etc. Have you seen any change or at least an openness to change in these areas?

STEWART O'CALLAGHAN: I think there is

a willingness to change, but a fear of getting it wrong. And I see this across research and health and also third sector. I think a lot of people now understand that there is a duty to be representative of the general population or minoritized populations and there is a duty to have this intersectional lens. But when it comes to applying it, they're not particularly sure how to do it. So, we as a charity quite often guide people on this and the things we recommend very closely align with the Teckro report, which is really interesting to see that there is this sort of unanimous voice and experience that we're all speaking with, and there has been some uptake of this, whether it's large organizations like the royal societies or unions of certain health professions, they're really embracing it and even down to apps. So there was a cancer app in the third sector that was advertising clinical studies and when we explained to them the sensitivity needed when asking about gender or sex registered at birth and helping people understand why this was being asked for certain studies and if it was always relevant, it's questions like that they were actually very open to hearing about, understanding they potentially need to change their wording and were very grateful for our ability to put it in a way that was easy to understand and that they could understand the benefit that they were then passing on to their users.

HANNAH LIPPITT: That's so interesting. You act as somebody kind of who advises these third sector groups as well. Have you any other examples?

STEWART O'CALLAGHAN: Definitely. I think even in industry, we've been supporting people in the third sector and our stakeholders and other

cancer charities and we sort of all try and guide each other towards the best services we can offer. That's been a really wonderful thing and also, just our voice in a lot of these rooms. So, cancer can be very, very tumor specific and gender specific. So, for us being quite a PAN disease view because we're focusing on person's identity, I was worried we wouldn't be listened to when we enter these big spaces, but actually we are and we're celebrated. And I think that's a really fantastic move forwards. But thinking as well about how things are going forwards in research, I think there's lots of discussion around grants becoming quite firm on their quota of needed represented samples. So, for example, a certain amount of people of color in their study sets, things like this. And as I said, industry and pharma is also very, very keen on this at the moment. And I think there are quite a few big players in that field that are moving headfirst into the inequality space and very keen to learn, engaging with as many third sector groups as possible and it's really encouraging to see. I think, it's always runs the risk of being tokenistic as touched on in the Teckro report. And I think that's where people moving into the inequality space have to be driven by the idea of person-centered care and patient benefit to keep them on the true path and making sure that it doesn't just become a performative sense of allyship.

HANNAH LIPPITT: Without naming any names, do you have any examples of performative versus, you

know, real change?

STEWART O'CALLAGHAN: In the era of being diplomatic and democratic, I think there are definitely people who sometimes jump in feet first and get in over their head a bit. And I think that can sometimes be frustrating when you're a small group and we've definitely had some times, some partnerships where people – and this has been really a few key partners actually – very early on, they're very, very keen for you to do whatever you want and they're just like, “Great, fantastic, can't wait to hear your voice.” And then when you get to the final stages of a piece of work – so you're nearing publication or whatever the endpoint is – they sometimes get cold feet because it's their name and potentially reputation on the line with what they've asked you to do. And we've had quite a few projects where they ask us for a very specific thing, we're very clear the whole way through the development and it gets to the final point and either something comes back with changes or something almost gets pulled at the last minute. And it can be really frustrating because when you've put a lot of time and effort and some personal skin in the game – you know, this is your community and I'm a patient, this is my lived experience – and people have that faltering step at such a crucial point, it does sometimes make you question their real commitment to this idea of inclusion. But then what happens then is they have that moment of reflection. And I think that's what's happening at that moment, that idea of publicly standing with and behind an issue or community that doesn't get a lot of focus and what it means for them to be on the front lines with us in what we want to talk about and how we want to talk about it. And in those moments, I think it's how they recover from that potential fumble that is what helps us regain our faith in them. But to really think on that almost as a point of advice, it's when you're engaging with a smaller community or a community of specific interest and you're asking them to do a piece of work with you or lead on a piece of work, have their back through to the end, because otherwise again, it can really feel like there was a performative element. And at the last minute you've had that fumble which can really, yeah, erode trust.

HANNAH LIPPITT: Probably with good intentions, but they didn't quite know what they were getting into. And then it can be a bit dispiriting when they turn around and say these things.

STEWART O'CALLAGHAN: Yeah, absolutely, I

mean, you know, trying to be as vague as I can be. But, you know, it's things like when people ask you to write a specific document and you tell them what's going to be in that document, and then you get the edit back before publication and all the things you agreed on are removed. It's things like that sometimes you can feel a bit hurt by, really, and especially when you put a lot of effort in. And as us working as a charity, we often do some of the stuff for free. So it's a lot of time that goes into things as well. So, so it really I think takes a point where, you know, we've got to the point where we can stand up for ourselves as a charity. And when that stuff does happen, we challenge it. And that normally is what forces that reflection and that person realizing what they've done. But it definitely has been our experience that when new partners work with

us, we are somewhat of a learning curve for them on what an active element of working with a minoritized community feels like rather than what it looks like on paper.

HANNAH LIPPITT: Looking to the future, how optimistic are you that we will see a real shift in attitudes in terms of patient engagement in the medical community?

STEWART O'CALLAGHAN: I think there is some real potential benefit as long as the messaging around research and inclusion really speaks to the general public, and we've seen this even as a charity. Sometimes when we are working in this space, it's quite easy to win over health care professionals really, because they understand the medical benefit. You can speak to them in this very technical level. They also have their organizations placing them on duty for inclusion, that's usually some law or policy that does the same. But when it comes to reaching out to the community, you really have to do almost a self-audit of your behavior, your organization, the historical traumas, things like that, and really appreciate that sometimes it's not as simple as just advertising for inclusion in a study, sometimes you have to think, “OK, how has this community been studied in the past? Is there some sensitivity that's needed or some acknowledgment of previous historical mistreatment or trauma that we have to acknowledge and prove that we've overcome or that we're not the same, or that we have found a way to work more in a supportive manner?” And if you think about LGBT people in general, and we think especially around our health, it's usually our community that has to advocate for equitable health care and treatment. So, if you think about HIV and PrEP and monkeypox, it's a lot of community action that actually drives stuff forwards. So, it's almost I think when I think of people in industry, in research, it's encouraging them to understand that they can absolutely lead on some things as well and include us at every level. Co-production is such a fantastic thing, but I think a lot of people often think about co-production at the end of the line when they're sort of getting ready to send something to market and they just do a last-minute focus group of sense checking: “Did we get it right?” But really, it's about bringing those key community voices in at every step from planning, from bid writing through the actual research and development process. And

that really, I think, allows you to attenuate what you're doing in a way that is going to be more successful and it's going to build more community trust, and it will begin to change the way people view research and hopefully remove some of this animosity and fear about how their data or experiences might be used.

One final thing I would sort of leave on is when I think about people engaging with the LGBTIQ+ community, there's a lot of fear about getting it wrong, and I think that's natural for everybody moving into every new space. But we're quite friendly and we're very, very willing to work with people, especially

when it's for the betterment of our community’s health so if you are listening and a bit nervous about where to start, reach out, find your local charity, find your local group, understand what their priorities are, see how your work and efforts can fit into that, and really embrace that idea of working together hand in hand. And I think

that will absolutely improve the landscape of our community’s health.

HANNAH LIPPITT: And where can people find you?

STEWART O'CALLAGHAN: You can find us at our website livethroughthis.co.uk and on socials, it's @LTTCancer and we've got a couple of campaigns always running really, there's always something new coming out, so absolutely take a look at those and reach out if you have any questions specific to our work or you want to work with us.

HANNAH LIPPITT: And that's your dose of Totally Clinical. You can download our podcast on Apple, Spotify and Google. Please subscribe and leave a rating and review so more people can find the show. See you on your next visit and remember to bring your friends. Thanks for listening! Goodbye!

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

Person-Centered Care

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.

Intentional Collaboration

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.