Article by Iciar Iturmendi-Sabater

Graphic design by Michie (Xingyu) Wu

The quality of healthcare in Canada is better than ever, and Canadians have never been healthier.¹ Over the last decade, the number of organ donors in Canada has increased by 59%, further enhancing health and saving lives.² Among the factors contributing to these improvements is the increasing emphasis on patient engagement: the collaboration between patients, family members, and informal caregivers with healthcare professionals to improve healthcare quality. 

Through patient engagement, Dr. Samantha Anthony leads a clinical research program focused on promoting psychosocial adaptation and quality of life in children who have undergone solid organ transplantation. She is a Social Worker within the Transplant and Regenerative Medicine Centre and a Health Clinician-Scientist at The Hospital for Sick Children (SickKids). Additionally, Dr. Anthony is an Associate Professor (status only) at the Factor-Inwentash Faculty of Social Work and is cross-appointed as an Associate Member with the Institute of Medical Science (IMS) at the University of Toronto (UofT). 

As a Health Clinician-Scientist in Social Work, Dr. Anthony is the first professional to hold this unique role in Canada. This position was created as a result of an innovative partnership between SickKids and the Faculty of Social Work at UofT. “I am always advocating for these positions because the clinical scientist role facilitates the bi-directional transfer of knowledge between clinical practice and research, which is a critical gap to bridge,” Dr. Anthony shares. Patient engagement is a way to bridge that gap.

When asked how patient perspectives have been integrated into her research, Dr. Anthony explains that when she started her career as a Social Worker over 20 years ago, survival statistics were viewed as the primary endpoints for considering the efficacy of solid organ transplants. However, a paradigm shift began where quality of life emerged as an essential outcome that deserved integral consideration within transplantation.

“As a clinician, I realized we needed to explore the lived experiences of transplant recipients, assess their post-transplant adaptation, and identify risk factors that affect their psychosocial wellbeing,” Dr. Anthony explains. In fact, it was her role as a Social Worker within the SickKids Transplant and Regenerative Medicine Centre that motivated Dr. Anthony to pursue a PhD within the IMS. Today, we know that the effectiveness of medical interventions is not predicted solely by objective medical measures, but also by patient-reported outcome measures (PROMs). PROMs capture the experiences of patients from a unique, subjective stance, which objective medical measures cannot assess on their own.² 

Dr. Anthony expresses that “traditionally, children’s lives were often understood from the perspectives of parents. But over time, there has been increasing awareness that we must provide children the opportunity to speak for themselves. [In order] to really understand children’s needs, we must listen to their views about health and well-being.” To achieve this, Dr. Anthony’s team is currently working on developing an electronic PROM platform called Voxe that will help to collect information about the experiences of pediatric transplant recipients.³ 

Dr. Anthony notes that many young patients want the opportunity to engage with others in the transplant community. “One of the things within solid organ transplantation is that it encompasses a very small patient population compared to other chronic disease populations. Many of the children have not met someone else who has had a transplant.” To address this, Dr. Anthony and her team are testing the effectiveness of a novel peer-to-peer mentorship program: the iPeer2Peer Support Mentorship Program in Pediatric Solid Organ Transplantation.⁴ Dr. Anthony shares, “We conducted mentorship training over three days with young adult transplant recipients across Canada. The three days were remarkable because we could see the mentors bonding and finding it very therapeutic to connect over shared experiences.” She adds that especially now, when transplant recipients feel the isolation of the COVID-19 pandemic on top of the unique experience of being a transplant patient, it is timely to offer the opportunity to connect patients and their families with others.

Within the field of patient engagement, Dr. Anthony’s clinical and research work also aims to acknowledge the power imbalance, racism, and lack of control that has shaped the skepticism and mistrust towards research and healthcare systems that many marginalized communities experience. Dr. Anthony’s team is exploring the organ donation and transplant experiences of Chinese Canadians (supported by the the Kidney Foundation of Canada) and Indigenous patients, families and communities in Canada (supported by a Canadian Institutes of Health Research Project Grant and the Leong Centre for Healthy Children Catalyst Grant). Dr. Anthony recognizes “it is critical that we co-create culturally appropriate research designs and methods while knowing that sustainable engagement takes time and effort. It is our responsibility to question preconceived notions of research and take part in both self-reflection and fostering new dialogue.”

By supporting the role of ethnoculturally-minded Clinician-Scientists like Dr. Anthony, patient engagement practices can promote more meaningful interventions, outcomes, and an inclusive healthcare system. Dr. Anthony expresses excitement that “in recent years, we have seen disciplines beyond medicine establish these clinician-scientist roles, which is wonderful. [These disciplines include] nursing, rehabilitation sciences, psychology, and social work.” She encourages young clinicians and scientists to be creative when thinking about how to bridge the gap between research and clinical care through efforts to foster patient engagement.

References:

1. Dhalla IA, Tepper J. Improving the quality of health care in Canada. C  Can Med Assoc J. 2018 Oct;190(39):E1162. 
2. Canadian Institute for Health Information, 2020. Annual Statistics on Organ Replacement in Canada: Dialysis, Transplantation and Donation, 2010 to 2019. [online] Ottawa: CIHI. 
3. Anthony SJ, Stinson H, Lazor T, et al. Patient-reported outcome measures within pediatric solid organ transplantation: A systematic review. Pediatr Transplant. 2019 Sep;23(6):e13518. 
4. Anthony SJ, Pol SJ, Lin J, et al. Creation of an electronic patient-reported outcome measure platform Voxe: a mixed methods study protocol in paediatric solid organ transplantation. BMJ Open. 2021 Oct;11(10):e053119. 
5. Anthony SJ, Young K, Ghent E, et al. Exploring the potential for online peer support mentorship: Perspectives of pediatric solid organ transplant patients. Pediatr Transplant. 2021 Aug;25(5).