Project Summary

Background: More than 20 million people over the age of 20 in the United States have chronic kidney disease (CKD). Because CKD patients have multiple comorbid conditions, they see numerous healthcare providers. Poor communication between physicians as well as different electronic health records systems creates fragmented patient care, resulting in suboptimal clinical outcomes. A CKD registry in development in Delaware seeks to join electronic health records from multiple sources to improve coordination of care.

Proposed Solution to the Problem: A team of patients, clinicians, and researchers will collaborate to gather information and facilitate patient-centered outcomes research (PCOR) based on the CKD registry.

Objectives: The aims of our project are to understand which outcomes patients, physicians, and payers are most interested in, what additional data would be important for PCOR, and to solicit feedback on research designs, privacy issues, and data sharing in the context of PCOR.

Activities: We will address these objectives through two conferences and a community academic workgroup. The two-year project will be comprised of four phases: (1) collaborative planning of first conference; (2) first conference; (3) community and academic workgroups focused on research training, grant writing, consensus-building by all stakeholders about important outcomes to be added to the registry, and stakeholder group sustainability; (4) second conference focused on dissemination and information sharing.

Outcomes and Outputs: The primary outcome will be the establishment of a core group of patients and other stakeholders that will build the relationships and common language necessary to sustain a community-academic partnership in the research process. Outputs will include a list of outcomes deemed most important for all stakeholders and evaluable using CER, a patient-centered research agenda about CKD, and a summary of patient concerns and possible mitigation regarding data security and data sharing in the context of CER using the CKD registry.

Patient and Stakeholder Engagement Plan: The leadership team includes one patient, one dialysis nurse, one representative of a federally qualified health center serving a vulnerable population, one representative of the Delaware Academy of Medicine, and two academic researchers. The team will be committed to following PCORI engagement principles. Patients and other stakeholders will be engaged in each phase of conference and workgroup development and implementation. Patients and stakeholders will be compensated for their effort as consultants or through subcontracts with their organization.

Project Collaborators: The Value Institute at Christiana Care is the lead institution for this project. Other institutions include the Delaware Academy of Medicine, Henrietta Johnson Medical Center, Dialysis Patient Citizens, and the Delaware Chapter of the American Nephrology Nurses Association.

Video produced by Christiana Care Health Services, Inc.

More on This Project

Project Resource: Conference Agenda and Speaker Bios

Project Resource: Project Newsletter Issue 3, May 2017

Partners in Research Agenda

Project Information

Claudine Jurkovitz, MD, MPH
Christiana Care Health Services, Inc.

Key Dates

26 months


Project Status
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: March 4, 2022