Background: Patients and health care providers lack information comparing best ways to care for patients with kidney stones (such as medications to prevent new kidney stones or the best procedures to get rid of painful kidney stones). Doctors and researchers often choose research aims without considering the issues that are most important to patients. The project team understands the importance of partnering with patients for research and recognizes the opportunity to educate and empower patients who wish to be part of these processes.
Proposed Solution to the Problem: The team will develop a patient-prioritized research agenda (i.e. a list of the most important types of research studies chosen by kidney stone disease stakeholders). The team will also develop a core group of stakeholders, including patients (both children and adults), caregivers, researchers, and clinicians, who will be known as the Kidney Stone Engagement Core (KSEC) to help carry out this work. This work will be done by researchers based in Milwaukee, Wisconsin and Philadelphia, Pennsylvania who direct the Pediatric KIDney Stone Care Improvement Network (PKIDS).
- To develop a PCOR/CER agenda focusing on what matters most to patients and their caregivers
- To create a community of stakeholders to partner in creating and carrying out this PCOR/CER agenda
Activities: The project will co-produce surveys with the KSEC sent to stakeholder groups to help develop a list of research themes. The team will perform virtual small group sessions with stakeholders to refine these themes, inviting stakeholders to participate in either separate (patients/caregivers will be separate from researchers/clinicians) or mixed stakeholder groups depending upon their preference. Based on these results, the KSEC will create a list of PCOR/CER questions to be sent to hundreds of kidney stone disease stakeholders, who will prioritize the list using either a three-round survey (known as a modified Delphi strategy) or a crowd-sourced platform (Codigital). Researchers and the KSEC will meet to finalize a research agenda.
Projected Outcomes and Outputs:
Short-Term Outcomes (during the project period):
- A PCOR/CER agenda that reflects the shared interests of patients, families, clinicians, and researchers
- The Kidney Stone Engagement Core
- Information on preferences for stakeholder engagement
Medium-Term Outcomes (post-project period):
- Studies based on the PCOR/CER agenda
Long-Term Outcomes (post-project period):
- PCOR/CER studies that will directly improve patient outcomes
- Opportunities to further improve upon ongoing engagement work
Patient and Stakeholder Engagement Plan: The team will recruit a diverse group of stakeholders, with attention to ensure a diverse set of experiences and backgrounds are represented. The KSEC will undergo special training to be uniquely qualified for co-production of survey materials and interview guides. Community building through a shared mission will occur throughout the process and will culminate at the workshop to finalize the PCOR/CER agenda.
Project Collaborators: The team will collaborate with groups across the country to identify key stakeholders. For this project, PKIDS will partner with the Michigan Urological Surgery Improvement Collaborative, the Oxalosis and Hyperoxaluria Foundation, the Urinary Stone Disease Research Network, the Research on Calculus Kinetics Society, the North American Stone Quality of Life Consortium. Additionally, the KSEC will collaborate with individuals with expertise in patient engagement.