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Hala Muaddi

Pitch Competition Winners from Living Donation Week 2020

On the final day of Living Donation Week 2020, PhD candidate and general surgery resident Hala Muaddi was preparing her pitch for Innovation in Living Donation Care, Education & Research.

"It was a really cool experience," she explains. "I was nervous, but more excited."

Hala's pitch earned her first prize – $10,000 provided by the Toronto General & Western Hospital Foundation, as well as the support of the Centre for Living Organ Donation, Dr. Gonzalo Sapisochin, and Dr. Nazia Selzner, Medical Director of the Living Liver Donor Program, Ajmera Transplant Centre.

Hala's winning project focuses on data collection to address disparities in access to liver transplant based on socioeconomic status (SES). Currently, there is no available data on whether patients with different SES who require transplant, are served equally throughout Ontario. Gathering this data will help identify underserved patient populations and guide the development of future interventions and strategies to overcome inequities in transplant access in Ontario.

"How I arrived at the idea is a bit of a long story. I came to Canada by myself when I was 17. Over time it was hard not to notice the disparities that exist in access to services, whether that's free services or supports or even knowledge. It was always something that stood out to me."

"Over the years, I became more and more interested in health equity; how healthcare could be improved for those who can't advocate for themselves, who might not even know what they're missing out on. Everyone should have the right to receive good care and to know about the care available to them. But you don't know what you don't know."

Results of Hala's research study will impact clinicians, researches, patients living in Ontario and beyond. With this new data, clinicians can begin to address disparities and ensure equitable access to living donor liver transplantation and the quality of life it provides.

Since its creation in 2018, the Centre for Living Donation aims to improve equitable access to living donor transplantation, leading its own interventions, collaborating with likeminded groups, and supporting research projects like Hala's. Competitors in the pitch competition certainly didn't disappoint when it came to addressing disparities in access to living donation.

Tied for second place were Transplant Talk and the Kidney Transplant Learning Project. Both projects aim to improve living donation and transplant education, with the ultimate goal of empowering patients and improving the way they think about living organ donation and transplantation.

Transplant Talk, a mobile app pitched by Marzan Hamid, will connect individuals with similar circumstances and backgrounds, and provide a platform to discuss donation and access peer-to-peer support. Similarly, the MOT Student Research Training Program (Emily Nguyen, Kateryna Maksyutynska, Lakindu Somaweera, Jonathan Wang, Cavizshajan Skanthan, Rachel Chen), presented the Kidney Transplant Learning Project which, when implemented, will improve outcomes for both patients and donors through self-directed learning and education.

The winners of this year's competition are expected to debut their findings or pilot projects next year, just in time for Living Donation Week 2021.

"This project helps our healthcare system, and the vital surgery we provide to patients, to be one step closer to being equitable in access," says Hala. "I am proud that something I imagined 10 years ago is starting to take shape and make a difference in our healthcare system and to patients' lives."


Samantha Anthony (r) and Istvan Mucsi (l)

The Chinese Canadian community is the largest visible minority in Canada. Chinese Canadians have an increased risk of end-stage kidney disease (ESKD), they have an apparent reduced access to living donor kidney transplantation (LDKT) compared to Caucasian Canadians.

"LDKT is the preferred treatment for patients living with ESKD," says Dr. Istvan Mucsi, Nephrologist, Ajmera Transplant Centre, UHN. "Reduced utilization of LDKT is true for both adults and children from the East Asian Canadian population. The very limited published research on this topic suggested that traditional values – cultural and potentially religious values – may be possible barriers. We designed our research to better understand potentially modifiable barriers and see what can be done to improve access to LDKT for Chinese Canadian patients."

The Centre for Living Organ Donation, in partnership with The Hospital for Sick Children (SickKids) and the Kidney Health Education and Research Group, will identify and address modifiable barriers to LDKT in the Chinese Canadian community in a two-year project, launched in September 2020. The project is funded by the Kidney Foundation of Canada through their Allied Health Kidney Research Grant Competition.

Primary investigators, Dr. Samantha Anthony (SickKids) and Dr. Mucsi (UHN) will work with patients and community partners to identify perceptions and knowledge about kidney disease and LDKT among Chinese Canadians, as well as perceived barriers and enablers to LDKT. They will also identify kidney transplant-related educational needs of Chinese Canadians. Finally, the project will suggest potential strategies and key partners within the Chinese Canadian community to enable patients in the community to fully explore treatment options for ESKD, including LDKT.

"At the moment it seems that within the community, the safety concerns about the risks for donors are quite prominent, and our preliminary discussions with Chinese Canadian physicians indicate that repeated, appropriate education would be extremely helpful," say Dr. Mucsi.

Living donation – for kidney and liver – is dramatically reduced in ethnocultural minorities across Canada, a disparity the Centre for Living Organ Donation aims to address by ensuring that everyone who is eligible for a live donor transplant has the option to explore this treatment option. Ongoing projects such as A.C.T.I.O.N. (https://nefros.net/a-c-t-i-o-n-project/) and A.C.C.E.S.S. LT aim to improve access to LDKT and living donor liver transplantation (LDLT) in diverse populations across Canada.

While these projects focus on specific populations, their findings lay the groundwork for subsequent research.

"This study can serve as a model that will inform future research exploring additional at risk ethnocultural groups, specifically South Asian and African Canadians and Indigenous populations in Canada," explains Dr. Anthony, Health Clinician Scientist, SickKids Transplant and Regenerative Medicine Centre.

"The results of this study will promote health equity, in particular equitable access to living donor kidney transplantation, thus permitting Chinese Canadians to have a just opportunity to reach their optimal health."


Improving Equitable Access to Living Donor Liver Transplantation

End-stage liver cirrhosis is on the rise in Canada. Over the next 20 years, the incidence of liver cirrhosis is expected to increase significantly.

For those living with end-stage liver disease (ESLD), time is of the essence. Liver transplantation is the only treatment for ESLD. But with a shortage of available organs, many die waiting for a deceased donor liver. Living donor liver transplantation (LDLT) is a life-saving treatment with excellent long-term health outcomes and better quality of life than a deceased donor liver transplant (DDLT). LDLT provides faster access to high quality organs for patients who require a transplant to live.

"Long-term patient survival post LDLT is similar to DDLT," says Dr. Nazia Selzner, Medical Director of the Living Liver Donor Program, UHN. "Our program is the largest and most specialized in the country, with 20 years of follow-up with liver transplant patients. In 2019 we performed 200 liver transplants, 45 of which were living donor transplants."

But despite the increasing need, access to LDLT and DDLT is not equal across various racialized communities in Canada.

"We're not sure what exactly creates the disparity," says Dr. Jennifer Flemming, Gastroenterologist, Queen's University. "There is research indicating a similar disparity in these groups when it comes to living donor kidney transplantation, and studies in the UK, Netherlands and the US recommend culturally and linguistically competent education and other support for patients. But nothing like this exists in Canada yet, for liver or kidney patients."

There is virtually no data on liver disease, organ donation, or liver transplantation in immigrant and racialized populations in Canada. The ACCESS LT Project, led by Dr. Flemming and Dr. Selzner will document the prevalence of liver disease, barriers to accessing care, and ways to improve LDLT rates in immigrant and racialized communities in Canada.

Phase one of this two-year project is funded by the Canadian Donation and Transplantation Research Program (CDTRP) as part of their "one transplant for life" initiative, a concentrated effort to transform transplant from treatment to cure. Phase two of ACCESS LT will be supported in part by the Centre for Living Organ Donation at UHN.

The project is in a preliminary stage – but the potential for its long-term impact is clear.

"We know liver disease is common in these populations. We know that access to LDLT is low. What we don't know is why, and that starts with data collection," says Dr. Flemming. "We are both extremely grateful to the CDTRP for the opportunity to investigate these populations and their specific needs. This data will be crucial in improving access to LDLT."


A first step to addressing healthcare inequities for racialized groups in Canada

For the thousands of Canadians experiencing end-stage kidney disease, a new kidney would mean a new lease on life. Kidney transplantation started in the 1950s and became routine in the 1960s. Toronto General Hospital, home to Canada's largest kidney transplant program, has done over 5,000 kidney transplants since 1966, 1,600 of which were from live donors.

Of the options available to patients experiencing end-stage kidney disease, a living donor kidney transplant (LDKT) is the preferred treatment option for eligible patients from a clinical perspective, with a pre-emptive live donor transplant being ideal. LDKT is preferred for a few reasons.

For starters, LDKT offers improved survival than dialysis and lasts longer than a deceased donor organ. It also results in significant improvements in quality of life. Finally, LDKT offers a large cost savings to the health care system; the benefits of a single kidney transplant have been valued at $2.7 million.

Yet, in Canada – where we pride ourselves on our universal healthcare – access to LDKT is dramatically reduced for members of racialized groups; according to multiple studies, South Asian, East Asian, Indigenous, and African, Caribbean and Black (ACB) patients with end-stage kidney disease have a 50-70 per cent lower likelihood of receiving LDKT compared to white patients.

The numbers tell us that something must be done – such a disparity seems "un-Canadian". But what the numbers don't tell us is how to address healthcare inequities in the context of their social and systemic origins.

"In academia, there's a very specific process and lens from which we investigate things," explains Lydia-Joi Marshall, Board Member of the Black Health Alliance (BHA). "But that lens misses out on the personal conversations. When I stepped outside my research bubble and saw the front-line work – social work, community lead work – I realized that that type of work is actually more in touch with what's happening. Having those conversations made me realize that those are the voices that need to be heard more in all institutions."

In 2019, the Kidney Health and Education Research Group (KHERG), founded by Dr. Istvan Mucsi, Transplant Nephrologist at UHN, reached out to BHA to jointly understand inequities in accessing LDKT among the black community and start finding answers – an opportunity seized by Marshall.

Mucsi began his nephrology career in Hungary, where he and his wife (co-founder of KHERG) had studied socio-ethno-racial issues in the Roma population and non-medical determinants of access to kidney transplantation. Since assuming his position at the Soham & Shaila Ajmera Family Transplant Centre at UHN (formerly UHN's Multi-Organ Transplant Program), LDKT has become one of his research priorities.

"In talking to my colleagues, anecdotal evidence indicated that racialized communities may face barriers in accessing living donor kidney transplant," says Mucsi. "And this was true even in the pediatric population – children with Asian backgrounds in particular seemed to have more difficulty securing a living donor compared to white children."

In its focus on ethno-cultural barriers, KHERG developed an observational, mixed methods study to assess ethno-cultural barrier in access to LDKT, to understand the why, and to start designing steps that could amend any potentially modifiable factors.

Late in 2019, KHERG, in partnership with the Centre for Living Organ Donation at UHN and Providence Health Care Research Institute at Providence Health Care in Vancouver received a grant from Health Canada to launch the A.C.T.I.O.N. Project (Improving Access to Living Donor Kidney Transplantation in Ethno-racial Minority Communities in Canada).

This 2.5 year project emphasizes the importance of community leadership and patient experience to address barriers in kidney health, transplantation and living organ donation. Down the road, it will serve as a transferable model for understanding and addressing inequitable access to healthcare in the context of chronic illness.

"Knowing that this project is going to be community-led and driven by patients and families is way more interesting than just collecting numbers and data," says Marshall. "We already know what the data says. What does it mean? It's not enough to state the obvious. We already know that a disparity exists. Why is there a disparity and what is causing it? There's so much valuable information outside the academic, peer reviewed world. I want that information to be brought to the surface and to inform how we do healthcare and how we interact."

Both Mucsi and Marshall are quick to point out that A.C.T.I.O.N. relies on confronting entrenched socio-cultural assumptions about race and health care. "Biases, privileges, and inequities frequently go unrecognized," says Mucsi. "They need to be unearthed and discussed openly. It's a sensitive topic but it must be done."

A.C.T.I.O.N. is rolling out in three phases. Phase one focuses on community engagement along with focus groups and interviews to understand the barriers that affect access to healthcare in general, as well as LDKT specific experiences. Phase two is an assessment of ingrained biases of the system and the development of tools and materials for community, patients, and healthcare practitioners. Finally, phase three includes a community-facilitated implementation pilot and evaluation of tailored tools and care interventions.

Mucsi and Marshall view A.C.T.I.O.N. as a first step to addressing healthcare inequities for racialized groups in Canada.

"Right now, people aren't open to stepping back from their academic lens and studying things in the context that communities are presenting," says Marshall. "It's not to say we don't need academia, but there are other ways to learn. Why can't we expand what it means to learn, expand what it means to be professional, and accept that there will always be narratives outside of our own."

"Out of this project, I would like to challenge the idea that the only 'expert' is the individual with the academic experience and be able to say that there’s a more holistic way of looking at health. Yes, some expertise is taught but there are other aspects that lead to wellness that we need to incorporate in a tangible way. I want to challenge people to realize what biases they come with, what restraints they are under. Let's break the mold of how we think."

This article originally appeared on the Kidney Health Education and Research Group website.