April 5, 2021

The NKF Patient Network

After almost two years of collaboration with volunteer advisory committees—comprised of nephrologists, patient advocates, and researchers in academia and the private sector—the NKF Patient Network is live!

On this episode of Life as a Nephrologist, we are joined by Kerry Willis, Lesley Inker, Alexander Chang, Cari Maxwell and Curtis Warfield. Our guests begin the episode by explaining how the patient network journey started and the purpose of creating it. It is the only kidney disease registry that has both patient-entered data and electronic medical records for patients with all stages of kidney disease. By joining the network, patients will not only help build this important data set, but they will have access to on-going clinical trials; health tips; individualized patient education for their specific stage of the disease; and a community of other patients.

The user friendly and secure Network collects both rigorous clinical and laboratory data from electronic health records (EHR), in addition to patient-entered data, which together allow for a complete picture of the patient experience. This model is innovative in that most research initiatives follow one path or the other—EHR or patient self-reporting. The NKF Patient Network will compile data on demographics, medical history, lifestyle, medications, blood and urine test results, in addition to extensive data on patient perceptions, challenges, and priorities. Overall, this network will allow patients to grow their voice, be transparent about their struggles and advocate for themselves. 

 

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