Dr Rayan Saleh Moussa and Nadine El-Kabbout
Why did you get involved as a consumer advisor with IMPACCT?
My journey with cancer and challenges navigating the health system pushed me into a variety of volunteer and advocacy roles for Cancer, Muslims, Youth, and Multicultural communities.
Seven years on from my journey as a survivor of cancer, I continue to volunteer and advocate for the delivery of culturally and spiritually appropriate services, and equitable healthcare, as well as creating a positive roadmap, experiences, and journeys for these communities where their values, needs, and preferences are honoured.
During this time, Rayan Saleh Moussa, a community member and IMPACCT researcher, reached out to me to join IMPACCT. I immediately jumped on board for several reasons:
- It was great to have someone who looked like me and understand my values in this field where we could partner in improving Palliative, Aged, and Chronic Care through Clinical Research and Translation.
- For too long research was an activity done to or on oppressed/marginalised people; it was something imposed from the outside. We can redress power imbalances that continue to characterise much academic research, which can limit the ability of certain groups to participate meaningfully in research. It may seem impossible to dismantle years of history in a single project, no matter how much goodwill the researchers and community establish together. But by practically involving and empowering community advocates in community-led research, it builds a foundation of real relationships, mutual respect, and true reciprocity.
- It is undeniable that collaborative approaches between the researchers and community advocates will improve medical research, treatment protocols, referral pathways, and clinical trial access. It will also improve relationships, allow for a better assessment of community needs and preferences as well as enhance trust and communication.
What are you most proud about regarding your involvement with IMPACCT?
Being a Panellist at PaCCSC & CST Annual Research Forum 2023 for “People from culturally and linguistically diverse communities in clinical studies- could do better”.
Being part of the panel demonstrates that my own experience is proof to not underestimate the transformative change you can make from the circumstances that you’re dealt with. If you want to do transformative work, partner with researchers and consumers, understand needs, discuss learnings, and share good practices. Progress will accelerate, and systems and experiences will transform.
But we need to all be a part of the process; constantly challenging the status quo by asking ourselves “What if?” and “Why not?”. Every person has a responsibility to make a difference in their own way.
What has been your biggest learning from being involved with IMPACCT?
Multicultural communities have previously been an unidentified, voiceless population in the health care system. The IMPACCT group provides an opportunity for more champions to ensure that the disparity in care-specific needs and the complex issues multicultural communities face continue to be recognised and featured on agendas so that their outcomes and experiences continue to improve.
Bringing issues to attention could lead to many benefits, the study of one underserved community may yield generalisable knowledge applicable to a larger group of minority populations, and a targeted intervention for one group may lead to benefits for people outside of this group.
Understanding the values underlying these requests for healthcare improvement and the challenges, which stem from lack of accommodations will inform efforts at improving cultural competence and providing culturally sensitive healthcare and research.
Nadine El-Kabbout is an Australian born to Lebanese migrants who called Australia home in the 1970s. As such, Nadine has achieved many “firsts” in her family. When she was diagnosed with Cancer as a young adult it placed her on a path towards Youth Advocacy and into the Community Services sphere. She volunteers and advocates for Youth, Cancer, Muslims, and Multicultural communities to identify and mitigate gaps in healthcare services for equitable healthcare delivery