Patient and Family Member Workgroup in Action!
The first hybrid Patient/Family Member Workgroup was held on February 27, 2023 in Chapel Hill, North Carolina. Attendees were in-person and virtual. Meeting attendees reviewed patient-facing study materials and provided input on how to gain patient buy-in for the study. Several of the workgroup members participated in a video shoot in which they shared their personal symptom experiences. The video will be used to help communicate the importance of the study to patients, clinic personnel and medical providers.
What are your goals for the SMaRRT-HD Study as a patient or family member partner?
To gain more knowledge about hemodialysis and how nursing staff can potentially improve their care for patients.
To gain insight on how care teams and patients can work together to make dialysis less burdensome on patients’ daily lives through regular, structured symptom monitoring.
To improve the quality of care and quality of life for other kidney patients through their patient experiences.
To help improve communication between patients and their care teams.
What did you learn from the first SMaRRT-HD patient workgroup meeting?
I learned about the other patients, their journey, their ups and downs while on hemodialysis, and their family connections.
[The SMaRRT-HD Study] is going to take everyone working together, with follow up.
Each dialysis patient is their own person beyond being a dialysis patient.