The Challenges When Making Changes in ICD-11

The process is tedious when writing a proposal to amend the ICD-11 classification.

ICD-11 was released by the World Health Organization (WHO) in February 2022. It is important to learn about the new classification, as preparation for its adoption by the United States at some point in the future.

In the fall of 2020, I was engaged to assist a client through the Coordination and Maintenance Committee code amendment process with a new code proposal for ICD-10-CM. I worked with the client to develop the proposal on PTEN Hamartoma Tumor Syndrome and provide education on the new code process. After the completion of the ICD-10-CM proposal, we discussed the classification in ICD-11.

My client, who is based in England, was not aware of ICD-11. I shared the website, and we began our journey. I do not have a deep knowledge of ICD-11 (I had taken the ICD-11 workshop during the American Health Information Management Association/AHIMA Convention in 2021), but I was able to walk them through the code set. The good news is that their topic, PTEN Hamartoma Tumor Syndrome, which is caused by genetic mutation in the PTEN gene, was present in ICD-11, but it was misclassified. In ICD-11, the syndrome was classified as a gastrointestinal disorder.

We decided to write a proposal to amend the ICD-11 classification. As they wrote the clinical portion of the proposal, I worked on the submission process. The submission process is not the same as that of the Coordination and Maintenance Committee, but there was information available on the ICD-11 website. There is also a coding tool that allows the user to code conditions in ICD-11. The WHO and AHIMA also have had education sessions on the classification.

My client and I developed the code alternatives based on similar conditions and how they are classified. The proposal was submitted in May 2021. As the proposal is reviewed, I receive emails whenever there is a change in the proposal status. The proposal has now moved through a couple of WHO committees.

I am happy to report that the Medical and Scientific Committee (MSC) recommended to support the proposal on March 9, 2022, and the Classification and Statistics Advisory Committee (CSAC) Small Group has agreed with the recommendation to move it forward on April 12. This Committee recommended approval with changes. The Committee did not recommend a specific code for PTEN Hamartoma Tumor Syndrome, but it would group the condition with similar conditions. This change does not accomplish the goal of having a specific code for the Syndrome so that the data could be tracked. We are now investigating if we can respond to the suggested changes and request a specific code for the condition.

If adopted, the change would be effective Jan. 1, 2023. While this will be great news, the length of time to amend the classification raises concerns. In the United States, the code proposals are presented twice per year, and we have new ICD-10-CM codes introduced twice per year.

Based on my experience with ICD-11, it could potentially take two years to make changes. 

Programming Note: Listen to Laurie Johnson and the Talk Ten Tuesdays Coding Report today and every Tuesday on Talk Ten Tuesday with Chuck Buck at 10 Eastern.