Our patient partners enhance our research with their lived experiences. In this month’s Patient Partner Spotlight, we connected with Marian Reich to learn more about what being part of the Can-SOLVE CKD community means to her. Marian has been an active member of the network via her involvement in a number of initiatives including the Patient Governance Circle, the Research Training and Mentorship Committee, as well as our Living Donor research project and Transplant Ambassador Program (TAP). TAP supports kidney patients and their families in learning more about kidney transplantation and living kidney donation. Marian also co-facilitated the Can-SOLVE CKD Storytelling Module to help network members gain the skills and confidence to share their patient stories in a health care setting. As a living kidney donor to her sister-in-law, Marian brings her lived experience and expertise to the network. We would like to thank Marian for her ongoing commitment to the Can-SOLVE CKD community.
Being in the Can-SOLVE CKD Network means a great deal to me. I do not believe you will find more courage and heart anywhere else. I learn more about what it is to live with kidney disease with every conversation I have. I have the opportunity to learn and be a part of current research into many aspects of kidney disease. The patient partners come from diverse backgrounds and lend all kinds of skills and knowledge to the work we do. To be included as a patient partner in research is an honour as the benefits of including patients in a research team continue to be revealed.
I have learned so much through my involvement with Can-SOLVE CKD. I am constantly learning about CKD and the challenges faced by patients as well as researchers. At first I was not entirely sure I had anything to offer since my background is not in healthcare. I quickly came to see that my opinions and ideas matter and patients are uniquely situated to contribute from a perspective not held by the researchers. I have been treated with kindness and respect by the researchers and admire their ability to engage patient partners in their work.
The research project I am involved with (Living Donor) involves understanding the barriers to living transplant. We are examining the donor evaluation process and through surveys trying to identify efficiencies which could shorten the time it takes for a potential donor to be screened for donation. Another part of the Living Donor project is the Transplant Ambassador Program. I work with a team of volunteers who share their stories of being a kidney donor or a kidney transplant recipient with patients in clinics when they are visiting their nephrology teams. This is happening in 13 hospitals throughout Ontario, so I am part of a larger provincial team. We are currently collecting data on the emerging themes which may stand in the way of living transplant. This volunteer work is valued by the patients who benefit from talking to someone who has lived the transplant experience.
I am also a member of the Patient Governance Circle and work with the Training and Mentorship Committee. I am proud of my contributions, my questions and my ability to continue learning and planning to improve the lives of patients with CKD. Most of all I am proud to share my personal story, as a living donor, so patients don’t have to feel as if they are alone.