Kidney Week

Abstract: PUB282

Lessons Learned from Patient Engagement in the Polycystic Kidney Disease Research Resource Consortium (PKD RRC)

Session Information

• Publication Only

Category: Genetic Diseases of the Kidneys

• 1201 Genetic Diseases of the Kidneys: Cystic

Authors

• Rao, Vinamratha, The University of Kansas Medical Center, Kansas City, Kansas, United States

Vinamratha Rao

• Gleason, Susan, Polycystic Kidney Disease Research Resource Consortium, Bethesda, Maryland, United States

Susan Gleason

• Hoggan, Jullie, Polycystic Kidney Disease Research Resource Consortium, Bethesda, Maryland, United States

Jullie Hoggan, MS

• Neter, Sarit, Polycystic Kidney Disease Research Resource Consortium, Bethesda, Maryland, United States

Sarit Neter

• Rahman, Taslima, Polycystic Kidney Disease Research Resource Consortium, Bethesda, Maryland, United States

Taslima Rahman, PhD

• Watnick, Terry J., University of Maryland School of Medicine, Baltimore, Maryland, United States

Terry J. Watnick, MD

• Guay-Woodford, Lisa M., The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, United States

Lisa M. Guay-Woodford, MD

• Mustafa, Reem, The University of Kansas Medical Center, Kansas City, Kansas, United States

Reem Mustafa, MD, PhD, MPH, FASN

Background

Polycystic Kidney Disease (PKD) is a prevalent inherited kidney disease that often leads to renal failure and profoundly impacts patient quality of life. The Polycystic Kidney Disease Research Resource Consortium (PKD RRC) aims to advance PKD research through resource development and sharing. The Patient Engagement Group (PEG) was established to integrate patient and stakeholder voices into PKD research resource development, aiming for a patient-driven agenda in PKD research.

Methods

Expert and participant input from various research initiatives, patient organizations, and literature reviews established the PEG framework. Structured recruitment, introductory webinars, and nominations yielded a diverse group of 10 participants, including individuals with PKD, caregivers, and patient advocates. Monthly virtual meetings with educational sessions familiarized members with objectives and projects undertaken by PKD RRC subcommittees. PEG members served as subcommittee liaisons, integrating patient perspectives into research resource development processes.

Results

Patient engagement in the PKD RRC included sharing experiences, learning opportunities, and continuous feedback to refine engagement strategies. While participant input did not routinely alter resource development plans, inclusion of patient perspectives added a patient voice dimension to subcommittee decision-making. For PEG members, involvement fostered personal growth and empowerment, enhancing their understanding of the disease and the research landscape. In particular, PEG members highlighted the importance of balancing data security with research efficiency to maintain trust and participation in clinical trials. Proposed future steps include ongoing innovation in engagement methods and inclusive recruitment. Achieving diversity in the PEG remains challenging but essential for representing the spectrum of patient experiences and needs.

Conclusion

This novel patient engagement initiative in a research resource consortium demonstrates the potential of involving patients in research resource development and establishing patient perspectives as a valuable research resource. The lessons learned highlight the need for effective communication, continuous education, and inclusive practices for effective patient engagement.

Funding

• NIDDK Support