KHI Current Project

ESRD Data Standards

Abstract

Despite being one of the most data dense disease states in the world, no one data standard exists for kidney failure, also known as End Stage Renal Disease. Creating a data standard for kidney failure will have multiple benefits. First, if prospective and retrospective research utilizes a common data standard then the pace of scientific discovery may be more rapid. Second, having a uniform data standard will allow for the easier creation of scientific registries for epidemiological surveillance. Lastly, a data standard may allow the development of metrics for value based healthcare.

Deliverables

Publication on Data Standards

Timeline

Launched September 2018 and completion is scheduled for Fall 2019

Despite being one of the most data dense disease states in the world, no one data standard exists for kidney failure. Creating a data standard for kidney failure will have multiple benefits. First, if prospective and retrospective research utilizes a common data standard then the pace of scientific discovery may be more rapid. Second, having a uniform data standard will allow for the easier creation of scientific registries for epidemiological surveillance. Lastly, a data standard may allow the development of metrics for value-based healthcare.

Dialysis is a life sustaining therapy that generates and requires management of impressive big data worldwide. However, little standardization exists for the definitions of key data elements with enough specificity to ensure that the data is interoperable, comparable and of predictive value. There have been some promising efforts, but none is global.

Once standardized, dialysis data can become more useful when combined for purposes of registries, clinical care, value-based purchasing or research.

  • Review potential measures and agree on core data set elements
  • Develop a recommended data standards for kidney failure
  • Publish the data standards for kidney failure
  • Develop a dissemination plan for the data standards

Role Name Organization
Co-ChairLorien S. Dalrymple, MD, MPHFresenius Medical Care North America
Co-ChairEric W. Young, MDArbor Research Collaborative for Health
MemberYoussef Farag, MD, PhD, MPHAkebia Therapeutics, Inc.
MemberMichael J. Fischer, MD, MSPHDepartment of Veterans Affairs
MemberRobert N. Foley, MBChBUniversity of Minnesota
MemberEmel Hamilton, MSN/INF, RN, CNNFresenius Kidney Care
MemberWael Hussein, MRCPI, MBBS, MScSatellite Healthcare
MemberEduardo Lacson Jr., MD, MPH, FASN Tufts University School of Medicine
MemberNorma J. Ofsthun, PhDFresenius Medical Care
MemberJohn H. Sadler, MDIndependent Dialysis Foundation
MemberFrancesca Tentori, MD, MSDaVita Kidney Care
Board of Directors LiaisonMahesh Krishnan, MD, MPH, FASNDaVita, Inc.
Staff LiaisonRick KempinskiKidney Health Initiative