ICHOM breast cancer patient-centered outcome measure set FHIR IG (Jira PSS-1893)

Description

The International Consortium for Health Outcomes Measurement (ICHOM) aims to unlock the potential of value-based healthcare by defining global Patient-Centered Outcome Measure Sets that involve provider observations as well as patient reported outcomes, and that drive adoption, reporting, and benchmarking of these measures worldwide to create better health outcomes for all stakeholders.

So far, measurement sets for 40 health conditions have been defined by bringing together global teams of patient advocates, healthcare professionals and researchers, representing over 50% of human disease burden, as described at https://www.ichom.org/standard-sets/.

To facilitate adoption and implementation of these ICHOM Patient-Centered Outcome Measure Sets in healthcare IT systems requires them to be published in an interoperable, open-standards-based machine-readable form. This will facilitate the semantically-interoperability collection of the required measurements along the patient care pathway, as well as the subsequent outcomes reporting based on these measurements. To this end, ICHOM would like to create and publish FHIR Implementation Guides for representing and exchanging their health-outcomes measurement sets, commencing under this Project Scope Statement with the Breast Cancer patient-centered outcome measure set. The international scope of ICHOM standard sets, including the one under scope for this proposal (Breast Cancer), will enable global usage, adoption, and implementation in clinical practice.

The proposed approach is to start with the Patient-Centered Outcome Measure Set specifically for Breast Cancer, and to leverage the learnings and reuse the FHIR IG results of this first condition to sequentially pick up additional conditions to build out a set of (dependent) FHIR IGs, including shared commonalities in a base IG. What is sought is the development and publishing of the FHIR representation of these already internationally validated and peer-reviewed quality measure sets.

The deliverables will include a FHIR Implementation Guide describing the representation of the ICHOM patient-centered outcomes measurement set for breast cancer, including:

o What to measure and to report: FHIR profiles, including events, patient reported outcomes, observations, conditions, reports, etc. and associated value sets and code systems (leveraging global, standardized terminologies incl. SNOMED, LOINC, ICD-10, as already mapped within the measure set)

o When to measure and to report: Scheduling information about which measurement needs to be collected at which point in time for a patient (at diagnosis, during admissions, during release from the hospital, 3 months after treatment, etc.), using workflow constructs.

Misc Notes
2025 July: TSC approved an STU Extension Request for HL7 FHIR® Implementation Guide: ICHOM Patient Centered Outcomes Measure Set for Breast Cancer, Edition 1 for 2 years 2023 August: TSC approved STU Publication Request for HL7 FHIR Implementation Guide: ICHOM Patient Centered Outcomes Measure Set for Breast Cancer, Edition 1 2023 August: We received a letter from ICHOM giving HL7 permission to use ICHOM in an IG Guide. This is not a joint copyright agreement. However as we put this IG out for ballot and publication, let’s make sure that we following the guidelines in this letter. Stakeholders: Academic/Research, Association/Goverment Agency, Consultant, Healthcare IT Vendors, Healthcare Provider/user, Pharmaceutical/Biotech, Vendor/Manufacturer