Engaging the Patient Voice

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Engaging the Patient Voice

Call for Applications for the Patient and Family Partnership Council Now Open!

The Kidney Health Initiative (KHI) is calling for applications to serve on the KHI Patient and Family Partnership Council (PFPC). KHI is a pre-competitive public-private partnership among the American Society of Nephrology and the U.S. Food and Drug Administration (FDA). Since 2012, KHI has grown to include more than 75 member organizations such as patient advocacy and health professional organizations, industry and manufacturers, dialysis providers, government agencies, and research organizations, fostering partnerships to develop treatment options for diseases that affect the kidney.

Patients and their care givers/care partners are at the heart of the KHI mission. To further patient involvement in KHI, the PFPC partners with KHI Board of Directors and staff to advise and make recommendations on member project proposals, KHI projects and overall efforts so that the voice, experience, and involvement of people with kidney diseases are meaningful and effective. Responsibilities:

The KHI PFPC is charged with driving patient-centered innovation in every stage of the development of devices, drugs, and biologics by:

  • Assisting with the development of strategic priorities and goals that can help federal liaisons, KHI members and patients partner to drive patient-centered innovation.
  • Providing patients and care givers/care partners an equal and fair representation in product development conversations by developing and leveraging educational and training tools.
  • Developing patient-centered projects.
  • Advising KHI members on project proposals and identifying patients and care partners to serve on KHI projects and initiatives.

The KHI PFPC is not a decision-making group, instead, ideas and recommendations are provided to the KHI Board of Directors.

Additional responsibilities of PFPC members include:

  • Attending monthly KHI PFPC videoconferences and meetings held in conjunction with KHI events.
  • Serving on KHI project workgroups and PFPC-initiated projects.
  • Serving as a KHI PFPC spokesperson, when appropriate.
  • Supporting document review and project contributions.

The three-year member term will start on January 1, 2025, with the option of one, two-year renewal. No financial compensation or honorarium will be offered for service on KHI PFPC. To learn more about the application process, click here!

People with kidney diseases and their care partners are at the center of the KHI mission.

The KHI Patient and Family Partnership Council (KHI PFPC) is one way KHI centers the patient perspective. By providing a channel for people with kidney diseases to get involved in advising and making recommendations on priorities and projects, the KHI PFPC is able to influence innovation in the kidney community and ensure the patient voice is heard in the development of clinical trials and development of new treatments.

Patient Organizations

Patient organizations who are KHI members play an important role in highlighting the patient perspective in drug and device development, supporting the work of the KHI PFPC, and advancing KHI's mission. Thank you to the following organizations for supporting the KHI PFPC:

Resources

Read perspectives of KHI's work from people with kidney diseases in the KHI PFPC newsletter:

May 2018 September 2018 December 2018 March 2019

December 2019