November 29, 2024

Our work at Can-SOLVE CKD is built around the experiences, priorities, and perspectives of our diverse patient partner community. Patient partners play a critical role in shaping studies and influencing policies that prioritize equitable, patient-centered care.  

This fall, Charles Cook and Kelly Loverock, two members of the Can-SOLVE CKD network, brought their unique perspectives to the American Society of Nephrology (ASN) conference in San Diego. Their reflections offer a powerful reminder of why patient voices are essential to advancing kidney health research and care. 

Charles Cook

Charles joined Can-SOLVE CKD as a patient partner in 2018 after receiving a kidney transplant in 2017. He shares his lived experience as both an organ recipient and former dialysis patient to help pave the way for future patients to receive better care. His exceptional work and dedication to the network earned him the 2024 Barb LeGay Award for Patient-Oriented Research. 

What brought you to ASN 2024? 

I was brought to ASN 2024 to co-present a poster depicting the journey of the work done by the Inclusion, Diversity, Equity, and Accessibility (IDEA) working group, which I participated in.  

What was your favourite aspect of the conference? Any sessions that really stood out for you? 

My favourite aspect of the conference was the company that I was able to keep while there. We all came to the conference from different places in Canada but once we got together in San Diego, we were a team. I never felt alone or unsupported at any time throughout the conference. We cared about and looked out for each other. The use of WhatsApp was completely new to me, but it was a genius move to help us all keep in touch.   

The most outstanding session to me wasn’t a session—it was our dinner with Dr. Mucsi.  Sharing ideas and information while breaking bread together is one of my favourite things to do, and I never get enough of it. I will remember and cherish that dinner and our conversations for a long time to come.  

As for actual sessions, the opening session which featured a welcome address from ASN president Dr. Diedra C. Crews was very energizing for me. I had no idea who the president of the ASN was. I was very pleased to learn that the current president is a woman of colour, which made my IDEA heart of hearts beat a little faster! Dr. Crews grew up in the South like me. Dr. Crews is passionate about removing race in the estimation of kidney function like me. Including race in these estimates has caused negative outcomes for marginalized groups such as members of the African, Caribbean, and Black (ACB) community. That hits close to home for me. It made me feel good to learn that other organizations are making the IDEA principles that we value in our network a priority in theirs as well. 

It was also pretty cool to watch former NBA star and 20+ year kidney transplant recipient Alonzo Mourning virtually receive the ASN Advocacy award for his work to raise awareness of CKD and raise money to fund research to help find a cure. 

Is there something you’d like people to know about patient partner engagement?   

One thing that I could say about patient partner engagement at ASN is that I had many conversations with people who agreed that patient partners were important and necessary to continue doing effective kidney research. However, the only other patient partner that I saw at the conference was Kelly. We were greatly underrepresented in our roles. Can-SOLVE CKD is way ahead of the curve on providing patient partners with opportunities to be seen and heard outside of our own network. 

I also appreciated all the pre-conference preparation that I received, especially the meeting with Cathy Woods. Cathy attended ASN 2023 alone. She tried to explain the enormity of the world’s largest nephrology conference. I didn’t get it then, but now I do! The San Diego Convention Center was a huge venue, and it was full of people all day long, every day. I felt slightly overwhelmed twice while I was at the conference. The first time was when the opening plenary session ended, and it took over 20 minutes to leave the room because there were so many people trying to leave at the same time! 

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Kelly Loverock

Kelly joined Can-SOLVE CKD’s Patient Governance Circle in 2021 as a patient partner/parent caregiver. She’s also a member of the pediatric committee. Kelly’s eldest son was born with CKD, and she’s hopeful that her involvement in patient-informed research will make a difference for her child and others living with the disease. 

What brought you to ASN 2024? 

I travelled to San Diego for the 2024 ASN to co-present a poster on patient partner recruitment (“Peer-to-Peer as a Patient Partner Recruitment Strategy in a National Kidney Health Research Network”). We presented the poster for the first time at the International Society of Nephrology Conference (ISN) in Argentina in April 2024, and it was a privilege to bring it to the ASN.  

My experience at ISN taught me that patient partnership in research is not as widely understood or reported on in the broader research community. At ASN, there was more engagement with the idea of patient partnership, but I still see so much room to improve awareness and engagement. 

What was your favourite aspect of the conference? Any sessions that really stood out for you? 

There was so much to take in! Firstly, I’m always inspired by so many people coming together for the shared aim of advancing research and knowledge on kidney disease. I enjoyed taking over Can-SOLVE CKD’s social account (X/Twitter) to try and capture this energy and share aspects of the sessions with those who couldn’t be there in person.  

Personally, I found the sessions about pediatric to adult transition particularly interesting. I know that the transition can be challenging, and it’s something that I think more and more about as my child gets older. My son is 12 and is starting to gain greater insight into his situation, and I’m hoping to set him up to best take care of, and advocate for, himself as he moves into young adulthood.  

Another highlight of the conference was talking to other poster presenters and visitors to our poster. The next day, I strolled through the poster area and focused on the pediatric nephrology and patient-oriented care posters. I really appreciated that the posters were organized by topic at ASN—it made it a lot easier to navigate. 

Is there something you’d like people to know about patient partner engagement?   

I knew nothing about patient engagement or patient partner involvement in research prior to joining Can-SOLVE CKD. I just knew I was eager to learn more about my son’s disease and how any knowledge I acquired might help me to support him. I did that through a lot of information gathering. My husband and I had, from the beginning, felt very isolated in our experience as parents to a child with a chronic medical condition. 

In 2021, I stumbled across an event about lived experience, joined the webinar, and ultimately subscribed to the Can-SOLVE CKD newsletter. When I found out they were seeking members to join their Patient Governance Council, I put my name forward and after applying and interviewing, I was selected. I’ve been learning and growing in this role ever since.  

What I’d like others to know is that their lived experience has incredible value and is worth sharing. There is a fantastic community of patient partners, researchers, and nephrologists at Can-SOLVE CKD and the environment is one of openness and support. I would encourage others to seek out these opportunities through Can-SOLVE CKD or other networks (or ask their health care providers if they are aware of opportunities). 

Find out how to become a patient partner 

 
Want to find out about opportunities to get involved in research? If you’re interested in becoming a patient partner and receiving news about research opportunities, sign up today through our KidneyLink portal. We look forward to connecting with you!