Can-SOLVE CKD patient-partners ensure that the network addresses and respects the unique needs and perspectives of patients. Patient-partners are also embedded in all Can-SOLVE CKD projects, working side-by-side with researchers towards the shared goal of better kidney health and care. In this month’s Patient-Partner Spotlight, we reached out to Dwight Sparkes to understand what being part of the Can-SOLVE CKD Network means to him.
I feel so blessed to be a part of the Can-SOLVE CKD Network. Being a patient partner lets me make a contribution to improving the care of all CKD patients including myself. In my experience with Can-SOLVE CKD, the interaction with the researchers and other patient partners is respectful, and my input is always considered. Sharing stories and connecting with other patients through Can-SOLVE CKD has made such a difference in my life. I no longer feel alone in living with my disease and I feel a part of something greater myself.
Being part of Can-SOLVE CKD has taught me many things in terms of the research process, kidney disease and health, and the vital importance of patient oriented research but more importantly it has taught me some things that I did not realize about my self. I am stronger and braver than what i thought. Never in a million years did I see myself speaking to large groups of people. I am starting to finding my own voice (thanks Leah!!) and what I have to say, matters.
I am proud to be involved in 4 of the Can-SOLVE CKD research projects. I am really excited about the Self-Management website that that will soon be going live from Project 3.2 led by Brenda Hemmelgarn and Maoliosa Donald. Patient partners, including myself, played a crucial role in its development. It going to be an important tool to help patients with CKD manage their disease effectively and live their best lives. I am also pleased that I was involved in possibly expanding the scope of the Kidney Failure Rise Equation (KFRE) project. The Kidney Failure Risk Equation is being considered to be added to the electronic health record for all patients in Newfoundland & Labrador, my home province.