Kidney Health Initiative (KHI)

KHI Workgroup Opportunity

Global End Stage Kidney Disease Data Standard Project: Standardizing and Harmonizing Way of Reporting Clinical Performance Indicators

Summary

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. In the US, Medicare has produced a micro-specification manual for dialysis, and other organizations such as Clinical Data Interchange Standards Consortium have produced standard clinical definitions for research purposes, that can be found here here.

Once standardized, dialysis data can become more useful when combined for purposes of registries, clinical care, value-based purchasing or research. The Global Chief Medical Officers of the multinational dialysis service providers had started some of this work, but recognize that a broader group of stakeholders engaged in the process is the best path forward.

Project

This project has the following objective:

  • Define a core End Stage Kidney Disease patient data set based on the existing CMS ESRD Measurement Specification Manual

In order to achieve this goal, drawing from the diverse membership of the Kidney Health Initiative, we will first assemble a workgroup of global stakeholders:

  • Academic investigators
  • Professional societies
  • Research groups, ie DOPPS, MMRF
  • Industry, ie dialysis providers and device manufacturers
  • Patient Groups
  • Other Organizations

The deliverable from this project would be publication that presents the ESRD data standard. It is anticipated that the workgroup meetings, analysis and writing of the standard will be completed within a 12-month timeframe. This project would represent a unique opportunity for a diverse group of stakeholders to work together towards standardizing ESRD data sets. This clarification of data would help facilitate prospective and retrospective trials as well as value-based purchasing or research activities.

Workgroup Role and Responsibility

The charge of the workgroup includes:

  • Review CMS MSM manual and agree on core data set elements
    • Conduct webex reviews of this document
    • Develop consensus for business rules for mathematical calculations
  • Develop a recommended ESRD data standard
  • Determine group that will house and provide access to the data standard
  • Publish the ESRD data standard within the 12-month timeframe
  • Develop a dissemination plan for the ESRD data standard
  • Determine the need and interest in an annual update
Estimated Time Commitment

Workgroup members will be asked to participate in regular conference calls or webinars (ideally no more than twice per month) and respond to emails in a timely manner. In-person planning or working meetings will be determined by the project plan. This is a volunteer position and compensation will not be offered for participation. Goal for completion of the project is 12 months with the project kicking off summer 2018.

Recommended Expertise
  • Direct experience and/or expertise with dialysis data
  • Relevant expertise and ability to represent at least 1 of the following stakeholder groups on the project: Publication.
    • Global dialysis providers (US, EU, Asia, LAm)
    • Academic researchers
    • Professional societies
    • Industry
    • Patient Organizations
    • Research groups, registries or trial consortia
    • Additional groups and organizations that are essential to this area
Application and Deadline

Friday, July 6, 2018

All interested candidates should apply to serve on this workgroup. The application can be sent to khi@asn-online.org.
with a subject line of "Workgroup: Global ESRD Data Standards". Please include the following information in your email:

  1. Name and contact information
  2. CV or resume
  3. Reason for wanting to participate in this workgroup (no more than 250 words)
  4. Explanation of how you will contribute to the project (no more than 250 words)
  5. Your interest in being the chair of the workgroup, a member or both

All applicants need to have an updated a disclosure form on file here.

Mailing List

If you are interested in the topic, but not in serving on the workgroup, please email khi@asn-online.org.
and KHI staff will send more information as available.

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

Selected References:
  1. Clinical Data Interchange Standards Consortium, 2018.
  2. Improving outcomes of dialysis patients by population health management—the Global Chief Medical Officer Initiative. The Lancet. October 22, 2016. .