The Academy/DPHA is pleased to partner with the Christiana Care Health System Value Institute around this significant public health challenge. Visit www.delaware-ckd.org for more information and to get involved. More than 20 million people over the age of 20 in the U.S. have Chronic Kidney Disease (CKD). Because CKD patients have multiple comorbid conditions, they see numerous healthcare providers. Poor communication between physicians and different electronic health records systems can create fragmented patient care, resulting in suboptimal clinical outcomes.
The development of a CKD registry in Delaware would join the electronic health records of multiple medical sources to improve coordination of care. A team of patients, clinicians, and researchers are collaborating to gather information and facilitate a Patient-Centered Outcomes Research (PCOR) project based on this CKD registry. The aims of the project are to understand which outcomes and research questions patients, physicians and payors 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. We will address these objectives through two conferences and a community academic workgroup.
This program is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (contract number 3426 PI: Jurkovitz).