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. Over 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 will be 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)

Each member of the KHI PFPC is asked to serve a term of three years.

KHI PFPC will follow the KHI reimbursement guidelines. KHI PFPC members will be reimbursed for travel and hotel accommodations for up to two in-person meetings each year. KHI PFPC members will be encouraged to attend for the KHI Stakeholders meeting and reimbursed for this additional stay. 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 quarterly as well as attend a yearly meeting held in conjunction with the Annual KHI Stakeholders Meeting each spring. A second in-person meeting per year will be considered if KHI PFPC feels it is necessary and the KHI Board of Directors approves the additional expense. Additional time commitments could include service on KHI project workgroups.

Application Deadline: Wednesday, March 16, 2016
All interested candidates should apply to serve on the PFPC. The application can be sent to khi@asn- 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. KHI staff will send a link to the form once the application is received.

Those selected to serve as members of the KHI PFPC will be notified in mid-April 2016 and will be asked to attend a PFPC meeting and the Fourth Annual KHI Stakeholders Meeting on May 25-26, 2016 in Silver Spring, Maryland.

Deadline: Wednesday, March 16, 2016
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 Ryan Murray, KHI Project Associate at 202-400-2485 or