Related Experiment Video
Updated: Jun 5, 2026
07:13
Digital Home-Monitoring of Patients after Kidney Transplantation: The MACCS Platform
Published on: April 12, 2021
Evolving Roles for Patients as Partners in a National Kidney Health Research Network: A Qualitative Study
Mark Melika-Abusefien1, Nicolas Fernandez2, Keila Turino Miranda3
1Department of Medicine, University of Calgary, Calgary, Alberta, Canada.
Summary
Patient partners in kidney health research are taking on more active and influential roles, moving beyond traditional engagement to advocacy and mentorship. This evolution reflects a growing trend towards equitable and collaborative research partnerships.
Area of Science:
- Health Services Research
- Patient Engagement in Research
- Chronic Kidney Disease Research
Background:
- Patient partnerships are integral to the Can-SOLVE CKD Network's operations.
- Understanding the evolution of patient partner roles and engagement structures is crucial for effective research networks.
Purpose of the Study:
- To characterize the evolution of patient partner roles within the Can-SOLVE CKD Network.
- To analyze the development of structures influencing patient engagement over time.
Main Methods:
- Secondary analysis of qualitative data from focus groups, interviews, and workshops.
- Inductive thematic analysis of deidentified transcripts and virtual 'sticky notes' from 97 participants.
- Involved patient partners, researchers, clinicians, and network operational staff.
Main Results:
- Identified a shift from traditional to emerging patient partner roles, including advocacy, outreach, and mentorship.
- Observed increasing patient partner self-determination in defining their roles based on identified needs.
- Noted the formalization of structures to support meaningful patient contributions and integrate diverse perspectives.
Conclusions:
- The evolving roles and supports for patient partners signify a move towards more collaborative and equitable research.
- Findings offer insights for large-scale research teams aiming to foster sustained and authentic patient engagement.
Related Concept Videos
01:28Chronic Kidney Disease III: Interprofessional Care
Chronic kidney disease (CKD) requires collaborative and comprehensive management. CKD progresses through stages and can lead to end-stage kidney disease (ESKD) if untreated. Interprofessional collaboration and patient education are crucial, enabling patients to manage their health and improve their quality of life.Diagnostic approach for chronic kidney diseaseThe diagnosis of CKD primarily focuses on the glomerular filtration rate (GFR), which assesses kidney function by measuring how well...
01:20Acute Kidney Injury V: Interprofessional Care
Acute Kidney Injury (AKI) requires a collaborative healthcare approach to restore renal function and prevent complications. Essential management strategies involve monitoring fluid and electrolyte balance, adjusting medications, initiating dialysis when necessary, and providing nutritional support.Fluid and Electrolyte ManagementFluid Monitoring: Regularly monitoring body weight, central venous pressure, and urine output helps detect fluid imbalances early. Patient intake and output are...
01:16Kidney Transplant III: Nursing Management
Postoperative Nursing Management for Kidney Transplant PatientsPostoperative nursing management care includes monitoring the surgical site, encouraging early movement, and promoting lung health through breathing exercises. Nurses also administer prescribed medications like H2-blockers, such as famotidine, or proton pump inhibitors, like omeprazole, to help prevent gastrointestinal ulcers and bleeding. Fungal infections in the mouth and bladder can result from immunosuppressive and antibiotic...
01:25Chronic Kidney Disease I: Introduction
Chronic Kidney Disease (CKD) arises when the kidneys progressively lose their ability to function, ultimately leading to end-stage renal disease. At this advanced stage, the kidneys can no longer filter waste or maintain essential body functions, requiring renal replacement therapy (RRT) through dialysis or a kidney transplant for survival.Early-stage chronic kidney disease and detection challengesIn CKD's early stages, symptoms often remain absent because healthy nephrons compensate for...
01:18Chronic Kidney Disease IV: Nursing Management
Nursing management is essential for preventing complications, maintaining stability, and improving patients' quality of life in chronic kidney disease (CKD). By using a structured approach, nurses help slow CKD progression and support effective patient care.1. Comprehensive patient assessmentEffective management begins with nurses reviewing the patient’s medical history, and identifying key risk factors like diabetes, hypertension, and nephrotoxic drug use. Nurses assess signs of fluid...
01:24Chronic Kidney Disease II: Clinical Manifestations
Chronic Kidney Disease (CKD) progressively impairs multiple body systems due to the accumulation of uremic toxins, which disrupt cellular functions across various organs.Neurologic symptomsNeurologic symptoms often arise early in CKD, as uremic toxin buildup drives changes in cognitive and motor functions. Patients frequently experience fatigue, headache, confusion, difficulty concentrating, and, in severe cases, seizures. Peripheral neuropathy commonly manifests as burning sensations in the...