Skip to content

Knowledge Center

Episode 152: (Part 1) Health Equity Data Efforts from a Federal Perspective

August 10, 2023

Written by Robert Tennant, VP Federal Affairs, WEDI

Developed by the World Health Organization (WHO), the International Classification of Diseases, 11th Revision (ICD–11) is the international standard for systematic recording, reporting, analysis, interpretation and comparison of healthcare mortality and morbidity data. This 11th revision allows countries to count and identify their specific health issues by using a more up-to-date and clinically relevant classification system. Health conditions and accidents are assigned ICD–11 codes, resulting in data that may be used by governments and others to design effective public health policies, and measure their impact, and used for clinical recording.

ICD-11 currently provides access to 17,000 diagnostic categories, with over 100,000 medical diagnostic index terms. The index-based search algorithm can also interpret more than 1.6 million terms.  In addition, the code set is designed to be fully electronic, with ICD-11 being digital health ready and offering API access. WHO is supporting the code set with an array of web services including multilingual support and in-built user guidance. A proposal platform allows all interested parties to suggest changes or additions to ICD–11 and to be viewed and discussed transparently.

WHO contends that ICD-10 is scientifically and technologically outdated. They are urging nations not to develop proprietary clinical modifications, arguing that ICD–11 is a flexible system which eliminates the need for local variants and allows for documentation with significant clinical detail. They recognize, however, that nations adopting ICD-11 will encounter challenges and suggest it will require several years to transition. In its ICD-11 fact sheet, WHO discusses that the time and amount of effort necessary for the implementation of ICD-11 largely will depend on two factors: whether a previous version has been in use and the level of penetration of ICD use in the national information infrastructure. As the Fact Sheet states: “As an estimate, a Member State newly introducing ICD-11 in a simple information system may need 1-2 years. Member States with a highly sophisticated information system where earlier versions of ICD are already in use calculate 4-5 years’ time necessary for the implementation of a new version of ICD.”

Here in the United States, we face unique challenges with moving to ICD-11, including migrating from the world’s most comprehensive ICD-10 clinical modification, incorporating the new codes into our value-based care programs, and transitioning both public and private sector stakeholders to using ICD-11 diagnostic codes in their billing processes.

ICD-11 was adopted by the 72nd World Health Assembly in 2019 and came into effect on 1st January 2022. The National Committee for Vital and Health Statistics (NCVHS), a U.S. federal advisory body mandated with making recommendations to the Department of Health and Human Services (HHS) on the use of codes sets and other issues, has formed a Workgroup on Timely and Strategic Action to Inform ICD-11 Policy to begin to review the potential implementation ICD-11 and ultimately develop recommendations to the Department. On August 3, the Workgroup held a public meeting for the members of the Workgroup and invited experts to discuss the implementation of ICD-11 for morbidity coding. Highlights of the meeting included:

  • A presentation by Dr. Kin-Wah Fung (National Institutes of Health/National Library of Medicine) entitled A practical strategy to use the ICD-11 for morbidity coding in the United States without a clinical modification.” Leveraging data from Medicare claims and the University of Nebraska Medical Center, Dr. Fung’s research found that the existing content of ICD-11 can fully represent 89.4% of ICD-10-CM codes examined in the study. The remainder require new extension or stem codes.
  • Small group breakout sessions that addressed the following issues: (i) The most important research questions remaining (what is missing and what is needed); (ii) What is needed to accomplish a national research agenda in a timely manner; (iii) Who and what organizations need to be involved moving forward? Are there specific agencies and organizations whose involvement is needed for specific studies; and (iv) How to coordinate and sustain this community to obtain needed information to support NCVHS’ recommendations to the Department of Health and Human Services (HHS).
  • Based on the small group discussions and review of the responses to the RFI, the Workgroup identified the following priorities: (i) Conduct additional research into content and mapping (i.e., code set comparisons, identifications of gaps in ICD-11), tooling (especially for post-coordination), and the value and impact of ICD-11; (ii) Establish an effective governance structure (including designating a lead agency within the federal government); foster public and private sector collaboration; (iii) Establish that the new code set would support a wide variety of use cases; (iv) Identify appropriate incentives for implementors; and (v) Identify opportunities to mitigate cost and burden for those implementing ICD-11.

Also on the meeting agenda was a review of the 19 responses to the June 2023 NCVHS Request for Information (RFI) on ICD-11. WEDI responded to the RFI, and our letter included the following recommendations for HHS action:

  • Name an ICD-11 ombudsman and establish a dedicated webpage
  • Complete a comprehensive cost-benefit analysis
  • Analyze the administrative and financial impact of overlapping CMS initiatives
  • Recognize the importance of establishing an appropriate implementation glidepath
  • Review and apply lessons learned from previous HIPAA implementations, especially the transition from ICD-9 to ICD-10
  • Pilot test ICD-11
  • Establish clear milestones and monitor industry readiness levels
  • Conduct industry outreach

Each of the 19 responses to the NCVHS RFI (including the full submission from WEDI) can be found here.

The NCVHS Workgroup expects to hold additional meetings and they are considering releasing a new RFI with a lengthier comment period to encourage additional organizations to share their perspectives on ICD-11. Access the Aug. 3 meeting agenda and presentation slides here.

Scroll To Top