Kidney Health Initiative (KHI)

Application for KHI Patient and Family Partnership Council (PFPC)

Summary of the Kidney Health Initiative:

More than 20 million Americans have kidney disease, and more than 600,000 Americans have kidney failure, also known as end-stage renal disease (ESRD). Despite these staggering statistics, too few new drugs have been approved to treat the kidney in the past decade. Moreover, certain products on the market treating other organs and conditions may have adverse side effects on kidney health, raising serious patient safety concerns. There are also significant racial and ethnic health disparities at every stage of kidney disease. As the public health implications and economic burdens of kidney disease continue to grow, the care and safety of these patients warrant increased attention.

Recognizing both the lack of clinical trials focused on kidney disease and the huge unmet clinical need for the same, the American Society of Nephrology (ASN) and the U.S. Food and Drug Administration (FDA) established the Kidney Health Initiative (KHI) in September 2012. More than 75 organizations and companies have joined KHI and support its goals and objectives. KHI is dedicated to improving patient safety and promoting the development of the best possible therapies for diseases that affect the kidneys and quality of life for millions of people around the globe.

KHI Patient and Family Partnership Council:

Since the mission of KHI is to enhance patient quality & safety and foster innovation in kidney disease, Patients and their care are at the heart of the KHI mission. To further patient involvement in KHI, the Patient and Family Partnership Council (PFPC) will partner with KHI Board of Directors and staff to advise and make recommendations on member project proposals, KHI projects and overall efforts of KHI so that the patient’s voice, experience and involvement is meaningful and effective.

PFPC Role and Responsibility:
The KHI PFPC is charged with providing strategic guidance to KHI about how to activate and include the patients and their families in KHI activities, including but not limited to:

  1. Advise KHI members regarding patient involvement in their project proposals
  2. Outline opportunities for patients to serve once a project has been endorsed
  3. Identify patients to serve on project workgroups
  4. Collaborate on developing patient centered project(s) to submit for KHI endorsement

The KHI PFPC is not a decision making group. KHI PFPC’s ideas and recommendations are made to the KHI Board of Directors for review and enrichment.

Composition of PFPC:
KHI PFPC is comprised of up to 10 members who are patients, families, caregivers or representatives of patient organizations.

Rather than a seat dedicated to kidney organizations, the KHI PFPC will be populated based on the following ideas:

  1. Focus on diversity which includes, but is not limited to, age and experience, ethnicity, and gender
  2. Consider a well-balanced representation by patient type which includes, but it not limited to the following:
    • Transplant recipient
    • Dialysis patient(s)
      • Hemodialysis
      • Home Hemodialysis
      • Peritoneal Dialysis
    • CKD (pre-ESRD) patient
    • Rare disease patient(s)

Term:
Members of the KHI PFPC are assigned a term of 3 years, with the option of renewing once. To help with the staggering of terms, the Nominating Committee can recommend 1-3 year terms for renewing KHI PFPC members.

Compensation:
KHI PFPC will follow the KHI reimbursement guidelines. KHI PFPC members will be encouraged to attend the annual KHI Stakeholders meeting and the New Member Orientation during ASN Kidney Week and reimbursed for these stays. No financial compensation or honorarium will be offered for their service on KHI PFPC.

Estimated Time Commitment:
KHI PFPC members are asked to join conference calls that are held each month and the KHI PFPC will be asked to meet in-person twice a year – once in conjunction with the KHI Stakeholders Meeting and once at ASN Kidney Week for a meeting and orientation with incoming PFPC members. Additional time commitments may include, but are not limited to, service on KHI project workgroups and KHI PFPC-initiated projects.

Application Deadline: Friday, June 30, 2017
All interested candidates should apply to serve on the PFPC. The application can be sent to khi@asn-online.org with a subject line of "Application: Patient and Family Partnership Council". Please include the following information in your email:

  1. Name and contact information
  2. CV or resume
  3. KHI member that you will be representing (if applicable)
  4. Reason for wanting to participate in the PFPC (no more than 250 words)
  5. Explanation of how you will contribute to the PFPC (no more than 250 words)

All applicants will be asked to complete a disclosure form which outlines any potential conflict of interest. KHI staff will send a link to the form once the application is received.

Applicants who are selected from the preliminary screening may be asked to complete a phone interview with current members of the KHI PFPC to be held on or around July 17-21, 2017.

Those selected to serve as members of the KHI PFPC will be notified in September 2017 and will be asked to attend the New Member Orientation held in conjunction with ASN Kidney Week 2017 in New Orleans, LA.

Deadline: Friday, June 30, 2017
KHI appreciates your interest in this project and hopes to make a decision about PFPC applicants in a timely manner.

If you have any questions, please do not hesitate to contact KHI staff at khi@asn-online.org.