Diversity and inclusion in cancer clinical trials

Rayan Saleh Moussa: Good morning or good evening, depending on what part of the world you are dialing in from today, or as my community grades one another as Salam Ali. Come, peace be with you! I would like to begin by acknowledging the traditional custodians of the land from which I am dialling in from today the people and pay my respect to the elders, past and present, a challenging them as the traditional custodians of that of knowledge for this land.

Okay? So first up a bit about myself. I'm a first-generation Australian of Lebanese heritage. My parents migrated to Australia in the late seventies, and I was born and raised in South West Sydney. I have a background in lab-based research. Having completed my PhD. In cancer, biology and therapeutics in 2,017.

And I've made the transition into clinical research by joining the Cancer Symptom Trials Collaborative, based at the University of Technology, Sydney, in September 2019. I am leading research projects in the 3 topics listed here. And so today, I'll be talking to you about what we are doing in this space and provide some tips and practical steps. As we all work towards making our clinical trials more inclusive.

So let's look at the statistics. Now, according to Australia's 2021 census data, our country became the first migrant majority English speaking country, whereby more than 50% of our residents were either born overseas or had a migrant parent.

We have about 5.8 million people that use a language other than English at home, and of these about 880,000 reported having a low English proficiency.

The most commonly spoken languages in Australia after English are Mandarin, Arabic, and Punjabi. If we look over to the Uk 2,021 census data, you'll see that we have similar figures with about 5 million people speaking a language other than English or Welsh at home, and about a fifth of these speak, having reporting, having low English proficiency and the most commonly spoken languages were Polish, Romanian, Punjabi, and order to

Rayan Saleh Moussa: now what this data means from city to Z city varies, and what we know is that people from these linguistically diverse communities are not evenly distributed. Rather they cluster in certain regions.

And if we were to look at a local example, the South Western Sydney Local Health District, which is the largest and fastest growing health district. In metropolitan Sydney we have a total of 966 1,000 people.

And more than 50% of this population is from a non English speaking background. The 2,019 report for this district revealed that approximately 10% of the population had low English proficiency.

Rayan Saleh Moussa:  with a higher proportion of those in people aged over 65 and over 65 of relevance to my research. And this presentation is that Arabic is the most commonly spoken language at almost 10% of the population so approximately 96,000 in this district. And this actually accounts for more than 25% of people that identified as having a an Arabic speaking background across the nation.

And so, despite our countries growing in ethnic diversity, culturally and linguistically diverse communities or cold communities continue to experience for a healthcare access and healthcare outcomes. And with these communities being clustered in certain regions.

Further pressure is added to an already strained health care system. The literature has identified several factors contributing to these health inequities, and these include things like widespread communication barriers

And lack of culturally and linguistically appropriate resources, such as disease and treatment, related information, the need for resources and training for clinicians to provide effective into cultural care and a health system that is established on a culturally dominant model of K. And is difficult for patients to navigate. And I've included a little explanation for what is meant by culturally dominant in the bottom corner here.

Rayan Saleh Moussa: and the critical component to addressing these health inequities is a conscious inclusion of cold communities in potentially life, saving clinical research.

Diversity and inclusion in clinical research is on both national and international agendas and reports and recommendations such as this one that was recently released by the Australian Clinical Trials Alliance are being published.

Rayan Saleh Moussa: But in conversations with local clinical research groups, one of the first questions I'm being asked is, where do we start? Or should we be translating, or start by translating documents and resources? And so my advice for the first question is

Rayan Saleh Moussa: to get to know your population better. Who are the people likely to be accessing the health services at your current clinical sites? Or perhaps you need to be looking at opening your studies for recruitment at clinical sites within the regions that have a high proportion of cold communities. Take the research to the community.

For though for those of you with disease, specific research refer to prevalence data, if it exists to determine what cold communities are likely to be impacted by this disease.

Rayan Saleh Moussa: and in doing so, this will allow for you to unlump the cold communities because cold is quite broad, and there are lots of sub communities within that category. And so by doing this you can take a more of a tailored approach.

For example, we have decided to start with the Arabic speaking population initially, and we hope to expand to other communities as we progress

Rayan Saleh Moussa: with regards to the second question, when we think about solutions for inclusive clinical research. We often fall into this trap of hyper focusing on the language component. But very little attention is given to or is known about the cultural or spiritual aspects of the community, and how this influences the decision making around new treatments or participating in clinical research. And so when individuals like myself, who can speak English fluently.

Rayan Saleh Moussa: well, with individuals like myself, we still experience those cultural and spiritual barriers. So translating promotional materials and things like your participant information sheets and your patient reported outcome measures.

Rayan Saleh Moussa: we'll no doubt address some of those language barriers, but if your study design has not taken into account into account cultural or spiritual sensitivities of the community you wish to recruit from, then you will potentially run into some feasibility issues. And so what you should be doing is engaging with the community first.

Rayan Saleh Moussa: And I'll come back to this point a later slide. You also want to be co- designing any sort of messaging or resources to ensure that you are getting the information across effectively and in a culturally appropriate manner. I just recently, last week, I, attendant of an event hosted by an Arabic translators and Interpreters Association here in Australia.

Rayan Saleh Moussa: and a key theme of the discussion was that although translators were able to accurately translate English to Arabic coherence was a major issue. so the message was literally getting lost in the translation, and this could be resolved if translators are included as key stakeholders in the Co. Design process rather than just being contracted to translate the document.

And this guidance document was brought to my attention and has some tips for those of us developing English documents for translation. The link to the Pdf. Is provided below, and I believe you will be receiving a copy of these slides

For the remainder of my presentation. I will provide you with some insight into and unpack some of those cultural and spiritual nuances within the Arabic speaking Muslim community as well as general strategies that may help you progress towards inclusive research design.

Rayan Saleh Moussa: So to kick things off. I'm going to briefly touch on language because it can provide an insight into culture. And I'm going to introduce you to 2 Arabic words.

Rayan Saleh Moussa: But first, first up Arabic is not a single language. In fact, in Australia the Arabic speaking community is quite diverse with origins from over 22 countries, and whilst there are some common terms. The Lebanese Arabic, for example, is very different to the Arabic spoken by people from Iraq. In addition to that, each will have their own cultural influences.

This is important to factor in when translating materials for your your studies and when when engaging interpreters to interact with participants.

Rayan Saleh Moussa: Now, going back to the 2 Arabic words that I want to introduce you to. The first one is the Arabic word for cancer, which is pronounced as in the Lebanese community. The word satellite is rarely used by patients or or their carers, or family and friends. In fact, in conversations people often have a more serious or pessimistic tone, they lower their voice to almost a whisper, and a lot of the time they replace the word entirely with a phrase which is pronounced as headache, which literally translates to that disease or that illness. So

Rayan Saleh Moussa: really, we are a community who are not yet comfortable, saying the word cancer in our own language. And there are incredible levels of fee, negativity, pessimism tied to this disease, to the point that we weren't even out of its name even after a loved one has passed away.

Rayan Saleh Moussa: So what does this mean for us as clinical researchers? Well, translated materials, or even conversations and assessments with clinicians, researchers, interpreters, etc., can be quite confronting. And so we need to ensure that cultural sensitivity and appropriateness is front of mind when designing our studies and our resources. And when interacting with the community.

Rayan Saleh Moussa: Another word I want to introduce you to is as Nabi. Now, if you were to ask Google translate how to say white person in Arabic. It will give you something entirely different. But I know that for a fact, in several Arabic speaking communities the word used to describe Westerners or white people is as Nabi, and the literal translation for this is stranger or foreigner, so by definition, by default, there is already a level of mistrust.

And what I want to highlight from this point is the importance of ensuring diversity within your investigator teams and site stuff someone that people from the cold community that you wish to recruit from can relate to, can trust someone that not only looks like them and speaks the same language, but also understands them and their cultural or spiritual values, someone that won't be perceived as an Asnaby or a foreigner. A very quick exercise. You can all do is survey your current research and site stuff.

How diverse are your teams, currently? And what are the in-house community connections and language skills that you can leverage from

Rayan Saleh Moussa: if we were to look at some broader systemic issues. Is there a skills shortage? Let's address that. How can we up skill. individuals, professionals from cold backgrounds working in health to be involved in clinical research or academia. What are the opportunities that we can create for these individuals to progress into leadership roles.

These are systemic gaps that, if we address will allow for a more holistic change within the clinical research landscape.

Rayan Saleh Moussa: Now let's go a little deeper, and look at the spiritual aspect. The Islamic faith teaches us that our body is on on loan a a temporary vessel which we are required to protect and preserve, so much so that changes to the natural form, such as getting a tattoo, is not permissible. Health complications are viewed as a test from God and and a blessing providing a means of cleansing one, since.

Rayan Saleh Moussa: So when it comes to clinical research, and we're balancing the risks and benefits and by risk. It's not purely about the medical implications, but also the religious implications. Instinctively one would question whether this is permissible where there is religious ambiguity. The common response is to exercise caution and avoid, where possible.

Rayan Saleh Moussa: so, coming back to participation in clinical research. Sometimes the decision making process will consider the views of a religious or community leader and a lot of the time. It is a family decision, not an individual one.

Rayan Saleh Moussa: Now, Western medicine or research leans towards the notion of survival at all costs. In Islam the concept of survival is not confined to life on earth. We believe this life is a stepping stone towards the afterlife for which we are expected to prepare, for, for example, the duty to be of service to others, which is usually in the context of helping the less fortunate.

Rayan Saleh Moussa: There is an opportunity here. If we were to tie this back in with clinical research which benefits future generations, then we can frame our messaging to align with this religious and moral obligation, especially in the context of palliative clinical research.

And I guess this is a great segue to the importance of community engagement and getting to know your population better

Rayan Saleh Moussa: building community relationships and trust is a process. It takes time. It can be, you know, anywhere, from weeks to months to years in the making and the events of the last few years with Covid, has seen mistrust and fear of the health system and research sector in General Skyrocket, especially in cold communities.

we have a lot of work to do to rebuild that trust, and if I could leave you with one bit of advice around community engagement, it would be to engage as early as possible. Do not approach the community with your predetermined priorities and solutions. A few weeks out of submitting to a grant, take the time to listen to their needs, their priorities, appreciating

Rayan Saleh Moussa: their cultural and religious context and generate solutions that consciously factor these considerations for.

And finally, your clinical trial designs keep diversity and inclusion front of mind when drafting those protocols. But

Rayan Saleh Moussa: plan ahead. For example, you may want to factor in community engagement activities, translations, medical interpreters, patient navigators into your trial design. And you want to make sure you've accounted for the associated costs. So costs, not just in terms of funding, but also in terms of the time that it will take to

Rayan Saleh Moussa: progress. With all of this.

consider the use of patient reported outcome measures, that are available in translated and validated versions, and for some guidance. I refer you to take a look at the cancer quality of life, expert service or sequest that is also based at the University of technology, Sydney. they have compiled a list of Pr, and it is publicly available on their website.

Rayan Saleh Moussa: So this is not a comprehensive list of strategies, rather some initial steps that you can take today. and just remember, we are all responsible for ensuring cold communities have a voice in and have equal access to health research.

Now this last slide, he provides a link to our web page for our diversity and inclusion program of research. Today the literature has mainly focused on the patient-sided barriers and enable us to clinical trial participation in cold communities, and very little attention has been given to the sponsor of site, level barriers and enablers. So for our first study, we have chosen to focus on the Arabic speaking population in Australia, and we are currently recruiting health care professionals across the nation to gain insight into their experiences with this community. In the context of research participation.

This study is ongoing, and unfortunately, I do not have data to share with you today. But we will post updates to our website and to our social media pages as things progress. Thank you.