The national non-profits American Association of Kidney Patients (AAKP) and Medical Education Institute (MEI) partnered to develop KidneyWorks™. This patient advocacy program is designed to identify working-age people with Stage 3-5 CKD—those whose kidney function is less than 60%—and to promote job retention as a key means for these individuals to continue to pursue their life aspirations with health insurance, income and an enhanced quality of life.
Founded in 1969, AAKP is the nation’s largest and oldest independent kidney patient advocacy and education organization and is governed by a patient-majority Board of Directors. Founded in 1993, The Medical Education Institute is a non-profit organization comprised of a team of experienced researchers, writers, editors, designers, social workers, and patient education experts with decades of experience in healthcare communications and whose mission is to help people with chronic diseases learn to manage and improve their health.
To ensure the success and longevity of KidneyWorks™, AAKP, and MEI are implementing the program in strategic phases to conduct proper research and development, identify and prioritize potential employment disincentives, create tools and resources, identify ways to inform those with kidney disease and policy-makers about the program, and develop analytics to measure outcomes:
• Phase 1 included hosting a national stakeholder meeting and the preparation and release of a policy white paper. The KidneyWorks Consensus Conference meeting was held at the Hall of States Building in Washington, D.C. in June of 2016. Influential experts from all sectors of the kidney community—patients, non-profits, professionals, members of industry and representatives from the Federal government met to address key barriers and challenges confronting employed people with CKD who may be at risk for kidney failure, and to discuss strategies to help them keep their jobs – and their dignity.
Patient and Professional Organizations:
American Association of Kidney Patients (AAKP)
American Health Quality Association (AHQA)
American Society of Nephrology (ASN)
Kidney Health Initiative (KHI) – (a collaborative of U.S. Food and Drug Administration and ASN)
Medical Education Institute (MEI)
National Renal Administrators Association (NRAA)
Renal Physicians Association (RPA)
Federal Government:
Office of Disability Employment Policy (ODEP), U.S. Department of Labor
Centers for Medicare and Medicaid Assistance (CMS), U.S. Department of Health and Human Services
Health Resources and Services Administration (HRSA), U.S. Department of Health and Human Services
National Kidney Disease Education Program (NKDEP), National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), National Institutes of Health (NIH)
Private Sector:
Baxter International
CiCoach
DaVita, Inc.
Dialysis Clinic, Inc.
Fresenius Kidney Care
Northwest Kidney Centers
Renalogic
• Phase 2, informed by Phase 1, will include the development of key objectives, strategies, tactics and metrics necessary to implement specific recommendations.
• Phase 3, building off Phase 2, will include creation and implementation of tools and resources, and measuring clinical and employment outcomes and behavioral changes.
The completed white paper and summary report is downloadable from this website at:
https://kidneyworks.org/kidneyworks-white-paper/