The Kidney Week 2018 Special Session “Measuring What is Important to Patients: A Patient-Centered Approach to Innovation,” featuring members of the Kidney Health Initiative Patient and Family Partnership Council (KHI PFPC), will examine some of the ways we and our colleagues are delivering value as partners in kidney disease research.
The Kidney Week 2018 Special Session “Measuring What is Important to Patients: A Patient-Centered Approach to Innovation,” featuring members of the Kidney Health Initiative Patient and Family Partnership Council (KHI PFPC), will examine some of the ways we and our colleagues are delivering value as partners in kidney disease research.
The KHI PFPC was created by the Kidney Health Initiative (KHI) Board of Directors in 2015 to confirm its commitment to keeping patients and care partners in the center of KHI’s mission and vision. Last year, the KHI Board reaffirmed that commitment by sponsoring our attendance at Kidney Week as a group for the very first time, and we were so inspired by what we saw and experienced in New Orleans last November that we quickly decided to submit our own session proposal for Kidney Week 2018.
I am humbled and excited to be able to deliver the Celeste Castillo Lee Memorial Lecture “Designing Innovative Alternatives to RRT: Patients as Partners” and speak about how patients and care partners have played a critical role in the KHI project Development of a Roadmap for Innovations in Renal Replacement Therapy (RRT) to begin the session (Celeste Castillo Lee is the KHI PFPC Founding Chair).
Ms. Jefferson will discuss the NIH/NIDDK Kidney Precision Medicine Project during her talk “Precision Medicine: Developing Meaningful Therapies for Patients Through Collaboration in Research,” and Ms. Wilkie will share the results of the KHI project “Fostering Innovation in Fluid Management” and describe how she and other people living with kidney diseases played a key role in the project’s successful completion.
In addition, we are thrilled to have Dr. Allison Tong, a Principal Research Fellow at the Sydney School of Public Health, join us to discuss the SONG Initiative’s involvement in patient-centered outcomes research in her talk “Patient-Centered Clinical Trials: Defining Outcomes That Matter Most to Patients”.
Embracing us as full partners in research is and will continue to be essential to the development of devices and therapies that will address our most important concerns and help us live our best lives. On behalf of Ms. Tong and the entire KHI PFPC membership I thank the ASN Kidney Week 2018 Program Committee for inviting us to deliver this groundbreaking session.
To learn more about the Kidney Health Initiative visit http://www.asn-online.org or contact Melissa West at mwest@asn-online.org . To learn more about The SONG Initiative please visit https://songinitiative.org .
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