News
Karen Young, “Kevin J. Leonard Award” 2023 Recipient
June 5, 2023
By: Sandra Dalziel
From left to right, Sandra Dalziel and beside her, Centre for Digital Therapeutics Scientific Director, Dr. Quynh Pham along with Senior Investigator, Dr. Joseph Cafazzo join Karen Young, 2023 recipient of the “Kevin J. Leonard Award” in the Leonard Library on May 11, 2023.
About Kevin J. Leonard
Before his death on July 15, 2013, Dr. Kevin J. Leonard was an Associate Professor at the Institute of Health Policy, Management and Evaluation (IHPME), University of Toronto, a Research Scientist at what was then the Centre for Global eHealth Innovation, now the Centre for Digital Therapeutics, University Health Network, and a passionate and dedicated patient advocate.
Diagnosed at the age of 14, Kevin lived with Crohn’s disease for more than 40 years which involved frequent and extensive interactions with the healthcare system and resulted in a strong belief in patient empowerment. Kevin was committed to furthering his vision of a more inclusive system, one in which patients are active partners in their own care. He believed the healthcare system could be transformed if patients had electronic access to their own health information, allowing them to be more effective in managing their care in partnership with their health providers. In his own life, Kevin was able to access some of his health information and was an active partner with his care team.
Paying tribute to Kevin’s tireless advocacy on behalf of patients, the “Kevin J. Leonard Award” was established at IHPME in 2013 and first presented in May 2014. It is presented annually to an outstanding graduate, masters or PhD, student whose work will engage and empower patients through the use of technology to become partners in their own healthcare.
During the April 19, 2023 Institute of Health Policy, Management and Evaluation (IHPME) Research and Impact Day, and for the first time since 2019, I presented the annual “Kevin J. Leonard Award” in person to tenth recipient, Karen Young, MSc candidate in Health Informatics, Health Services Research. Drawing from lived experience, and with enthusiasm and energy, Karen is driven to ensure our healthcare system recognizes and supports the ability of all patients to be active partners in their care.
My presentation remarks below describe Karen’s research and also reference this year’s 10th anniversary of the May 2014 inaugural presentation of the “Kevin J. Leonard Award”, and Kevin’s death July 15, 2013.
I am pleased to announce Karen Young as the 2023 and 10th recipient of the “Kevin J. Leonard Award”, candidate for an MSc in Health Informatics, Health Services Research.
Driven by frustrated lived experience assisting her Chinese Canadian parents and grandparents to navigate the medical system. Karen thought there had to be a better way.
Building from her Supervisor, Dr. Quynh Pham’s culturally-competent digital health research agenda, Karen seeks to make a difference for her community – working class immigrants who speak English as an additional language, who have less money and less education.
For her Masters’ thesis, Karen initially decided to culturally adapt FOR Chinese Canadian prostate cancer survivors the patient-facing NED (No Evidence of Disease) Nurse application used in University Health Network’s NED virtual prostate cancer care program. But as Karen progressed through her research, with careful and critical thought, and by drawing from several frameworks, she concluded that addressing STRUCTURAL inequities is a preferred approach, having the added benefit of being able to extend the adaptation beyond the Chinese Canadian community.
In Phase 1, Karen undertook a needs assessment obtained through individual interviews with 12 prostate cancer survivors and 2 partner caregivers recruited through a supportive care program in Vancouver. The participants self-identified as Chinese or Chinese Canadian, were fluent in English, Cantonese or Mandarin, and 13 of 14 identified English as an additional language. Interviews were completed in their language of choice helping to foster trust.
Karen also devoted considerable time and energy to creating a safe space based on Indigenous principles so that the participants felt comfortable sharing their input and feedback. Participants spoke of being a burden to family; feeling ashamed and a pressure to privately endure; struggling with system navigation compounded if they also struggled communicating in English; feeling uncomfortable when voicing their needs; among others. These are behaviours which stand in the way of shared decision making with their care providers, and family involvement and support.
In Phase 2, Karen translated these Phase 1 findings into a set of design principles, modifying existing features and creating new ones for a structurally adapted NED Nurse app, built in collaboration with colleagues at UHN’s (University Health Network) Centre for Digital Therapeutics. Most significantly, none of the modifications were specific to Chinese culture.
With the adapted prototype built, Karen returned to her Phase 1 participants for feedback with respect to acceptability, appropriateness and feasibility. An overarching result showed participants thought that receiving follow-up care through this prototype would make them feel safe and comfortable as a member of the healthcare team.
Specifically, a couple of adaptations include translating the app features to Chinese and offering communication support in their preferred language with medical terms and details about drugs. Structurally adapting for language ensures care information is well understood supporting the patient’s ability to be an active partner in their healthcare, the fundamental principle of the “Kevin J. Leonard Award”. And furthermore, these adaptations can be applied to any community. Next steps around the adapted app’s implementation have been discussed.
This year, I was able to return to my tradition of meeting the recipient in person to help prepare my remarks. Karen’s enthusiasm and commitment to addressing structural inequities in the healthcare system were clearly evident, and I anticipate finding Karen right in the middle of this work in the future, impacting many communities of patients and their partner caregivers.
As we mark in 2023, the 10th anniversary of the May 2014 inaugural presentation of the “Kevin J. Leonard Award”, and Kevin’s death July 15, 2013, I have witnessed firsthand the tremendous strides in digital health, and I know this march will carry on in the years ahead.
It has been my absolute honour and pleasure to present this annual Award to 10 very special and talented people who I know Kevin would have loved to have met and sat down with to hear all about their studies and their plans – knowing that Kevin would have offered thoughtful observations and encouragement. I always enjoy my opportunity to connect and catch up with the recipients at my annual luncheon or dinner.
And on this 10th anniversary, I wish to acknowledge and thank IHPME and the then UHN’s Centre for Global eHealth Innovation, led by Joe Cafazzo, for their leadership in establishing the “Kevin J. Leonard Award” and its awarding these past 10 years. Thank you, Joe, Steini, Rhonda, Whitney, Aviv and Zoe.
Finally, on a note of meaningful succession, Kevin was Joe Cafazzo’s PhD Supervisor. Thank you, Joe, for your leadership 10 years ago and for your encouragement and support as well as your steadfast commitment to the presentation of this annual Award ever since. Joe, I know Kevin would have been so proud of you and all your accomplishments.
Joe was Quynh Pham’s PhD Supervisor and Quynh is also the 2017 recipient of the “Kevin J. Leonard Award”. Even though you never knew him, thank you, Quynh, for embracing Kevin’s legacy and wholeheartedly committing to expanding the communities of “patients as partners in their healthcare” through your digital health research program.
As I have already mentioned, Quynh is Karen’s Masters’ Supervisor and I now ask you to please join me in congratulating Karen Young on being selected the 2023 recipient on this 10th anniversary of the “Kevin J. Leonard Award”.