ITI Planning Committee 2025 Meetings

De-Identification Profile Proposals | Thursday, January 9th @ 7pm CT/8pm ET

Present: Essien Ge, John Moehrke, Soyean, Kyoohyung Han, Matt Blackmon, Chris Melo, Martin Rosner, Spencer LeGesse, Alan Zhang, Lisson Zhang Discussion points:

• Update De-Identification Handbook
• DeID Handbook update - two/multi stage process

Comparison of Two De-Identification Profiles

De-Identification Handbook Update (Focus on PETs and Genomic Data)

Focus

• Targets updating the existing IHE De-Identification Handbook to address collaborative data linking challenges.
• Emphasizes **Privacy Enhancing Technologies (PETs)**, particularly for genomic data and cross-organizational use cases.

Problem Addressed

• Lack of common best practices for emerging healthcare data modalities (e.g., genomic data) and collaborative analysis workflows.
• Security and privacy risks in data sharing due to the absence of standardized threat models and cryptographic methods.

Key Use Cases

• Cryptographic tokenization for private data matching without revealing personal information.
• Secure genomic data sharing using cryptographic PETs.
• Workflow combining FHIR and Multi-Party Computation (MPC) modules for increased interoperability.

Proposed Updates

• Updates to the handbook incorporating PETs and genomic use cases.
• Examples of cryptographic workflows and open-source reference implementations.

Two/Multi-Stages De-Identification Process

Focus

• Introduces a two-stage de-identification process to address challenges with overly strict de-identification profiles.
• Focuses on **incremental de-identification**, allowing for regulatory-required attributes (e.g., patient age, weight) to be retained initially and removed later.

Problem Addressed

• Strict de-identification profiles (e.g., DICOM Basic Profile) remove necessary demographic data, making datasets unusable for AI development and regulatory compliance.
• Rework and delays caused by inadequate initial de-identification processes.

Key Use Cases

• Minimal de-identification performed at the modality/PACS level.
• Additional de-identification by experts to meet specific data-sharing requirements for secondary use (e.g., AI development).

Proposed Updates

• Introduces a stepwise approach to de-identification, allowing for staged compliance.
• Addresses usability gaps by ensuring datasets meet the needs of regulatory and secondary users.

Discussion Points

• De-identification handbook can be updated with both use cases
• Each use case may result in a profile
  • e.g., last de identification handbook resulted in this whitepaper
• Philips presented detailed use case for two/multi stage process
• Soyean provided details on genomic data/linking use case

Actions

• Each team will update respective proposals based on discussion
• Each team will provide more background on each proposal
• Follow-up meeting scheduled Feb 13th after Chinese New Year
• @John to create GitHub repo for working documents
• Those not already in itiplan and ititech mail lists to follow-up with Sara Bell

De-Identification Profile Proposals | Thursday, February 13th @ 7pm CT/8pm ET

Goal of ITI Tech/Planning Discussion

• Establish a single profile proposal to:

 * Prevent two groups from modifying the de-identification handbook at the same time.
 * Avoid competing, identical profiles during the planning decision vote.

• Time is allocated on Tuesday's agenda to refine and develop this proposal.

Proposed Problem Statement

The problem statement does not need to be complex. A possible draft:

"Update the de-identification handbook with collaborative analysis and de-identification workflows. Major additions include the two-step de-identification process and multi-party data sharing. Several other sections of the handbook will also require updates."

Summary of Profile Proposals (By Each Group)

Each group provided additional details on their proposals:

Next Steps

• Tuesday’s agenda will be used to finalize a single profile proposal that integrates key elements from both approaches.
• Need to finalize consensus on scope and major additions to the handbook update.