Purpose


“Collaboratively mature and expand the representation of oncology data in OMOP by establishing standard and transparent conventions”


Collaboration

  • Encourage a diverse community to contribute towards global, comprehensive standards
  • Leverage asynchronous mechanisms of collaboration for greater international interoperability

Expand

  • Create and expand conventions to accommodate the various representations of oncology data in the OHDSI community
  • Supporting both observational and curated data sources
  • Source EMR and nation agnostic

Standard

  • Unambiguous, standardized conventions
  • For a specific type of source data, there is a single standard representation for it

Transparent

  • Thoroughly document all conventions from both an ETL and analysis perspective to facilitate standardized adoption and interoperability
  • Clearly and publicly describe the processes and outcomes of this effort


Goals

The overarching goals of the OHDSI Oncology Working Group:


1) Oncology research

  • Enabling
  • Conducting
  • Promoting

2) Maturing oncology standards

  • Data model, ontologies and conventions
  • A shared, international oncology data standard
  • Support of observational, claims and curated data sources

3) Community growth

  • Model adoption and growth of network
  • Data holders, developers, and subject matter experts
  • Research use cases and applications


Notable Challenges


1) Oncology data in OMOP

  • OMOP typically a person-centric model
    • Oncology data often requires additional levels of detail
    • e.g., “Observations about observations”
  • Novel entity relationships in source data


2) Source data representations

  • Differing granularity and detail between data sources
  • Goal of maximum accommodation while maintaing FAIR principles
  • Sources include observational, claims and curated data
    • Sources often overlap and can provide complementary data for same patient population


Condition Map

Diagram illustrating condition modifier representation



Context

  • An extensive and international outreach effort has been conducted to aggregate the gaps and pain points of implementing oncology data in OMOP, which is the starting point of this project. All of that feedback has been ingested and organized within a Github Project. That said, we know what we know now but that list is always expanding, for the better.
  • We are moving at a faster pace than the official OHDSI vocabulary releases and consequently will be maintaining a “delta”, or “development”, version of the vocabularies. At the end of this effort we plan to have these changes folded back into the standards. Additionally we will consult with the vocabulary team when applicable.
  • A global oncology standard cannot be static. It must be iteratively expanding and maturing and requires an active community and extensible solutions.
  • A philanthropic funder has invested in this effort and is exploring additional collaborations and opportunities to accelerate and expand upon it.



Scope

  • The majority of the outlined work is either falls into one of four buckets:
    1. Deciding on a convention
    2. Investigating vocabularies
    3. Modifying the vocabularies
    4. Creating documentation
  • The tasks have been broken down into smaller more easily tackled chunks such as “investigating an issue” or “complete outstanding vocabulary changes that have content provided”, or “documentation of _”. The intent is to enable many small contributions rather than few large ones.
  • The plan is to complete as much as we can, prioritized by use cases, in preparation for a new stable release. After that milestone is reached, we will continue to iterate and improve while adhering to a stable release schedule.



What we need

  • Diverse community feedback
    • Feedback on decision points - Will this solution work for your data?
    • Any experienced issues, hurdles or ambiguities
    • Use cases, studies, ambitions
  • Community contributions
    • Vocabulary:
      • Investigations - e.g., are there duplicate standard concepts for laterality?
      • Modifications - e.g., provide the modifications to de-standardize duplicate laterality concepts
    • Documentation
      • Identifying gaps
      • Populating content



Project Management

  • Enabling studies is the primary determining factor for prioritization of effort
  • The Github Project will be the main resource for tracking the project deliverables, progress, and avenues for contribution
  • To enable international contributions and rapid progress, we are facilitating communication both within meetings and asynchronously through Github and the OHDSI Oncology MS Teams. Any decision points discussed during the calls will also be represented in Github/Teams for further discussion before final decisions are made

Proposal Review

  • Two weeks prior to a scheduled proposal review:
    • A MS Teams channel will be created within the Oncology WG group to facilitate discussion
    • The proposal will be provided and linked within the teams channel
    • A ping will go out on both the forum post and within the teams group to announce the topic
  • The meeting in which the proposal was discussed will be recorded and a link posted in the channel afterwards


Github Project