INTERNATIONAL CONSORTIUM FOR HEALTHOUTCOMES MEASUREMENT LTD

Their core work

ICHOM develops standardized sets of patient outcomes that matter most to people with specific medical conditions. In H2020 projects, they contribute their expertise in defining and measuring what actually matters to patients — translating clinical data into meaningful health outcome benchmarks. Their role across cardiovascular, oncology, and health data projects positions them as the bridge between raw clinical evidence and structured, patient-centered outcome measurement. They bring a unique methodological framework for ensuring that big data initiatives measure the right things, not just the easy things.

What they specialise in

How they've shifted over time

ICHOM entered H2020 through disease-specific work in cardiovascular outcomes (BigData Heart, 2017), focused on heart failure and atrial fibrillation. By 2018, their involvement broadened significantly into health data infrastructure — EHDEN brought them into OMOP CDM standardisation, FAIR data principles, and federated networks, while PIONEER extended their outcomes approach to oncology. The trajectory shows a clear shift from measuring outcomes in one disease area to becoming a cross-disease standards body embedded in Europe's health data architecture.

ICHOM is evolving from a disease-specific outcomes definer toward a horizontal enabler of interoperable health data systems across multiple therapeutic areas.

How they like to work

ICHOM operates exclusively as a specialist contributor — never coordinating, joining as participant or third party in large consortia. With 67 unique partners across 17 countries from just 3 projects, they work in very large, multi-national research networks (averaging 22+ partners per consortium). This pattern suggests they are sought out for their specific methodological expertise rather than building their own research programmes, making them a reliable and low-friction specialist partner to bring into a consortium.

Despite only 3 projects, ICHOM has built connections with 67 unique partners across 17 countries — a remarkably wide network driven by their participation in flagship IMI-scale consortia. Their reach spans most of Western and Northern Europe with strong links to major academic medical centres and pharma companies.

What sets them apart

ICHOM is the global standard-setter for patient-reported health outcomes — their outcome sets are used by hospitals and health systems worldwide. In EU research, they are irreplaceable when a project needs to define what "better patient outcomes" actually means in measurable terms. No other H2020 participant occupies this exact niche of translating clinical endpoints into standardised, patient-centered benchmarks that work across countries and health systems.

Highlights from their portfolio

• EHDEN
  Their largest funded project (EUR 341,875), building the European Health Data and Evidence Network — a continent-wide federated health data infrastructure using OMOP CDM and FAIR principles
• BigData Heart
  Participated as third party in this major cardiovascular big data initiative covering heart failure, atrial fibrillation, and acute coronary syndrome across Europe
• PIONEER
  Extended ICHOM's outcomes methodology into prostate cancer, addressing critical evidence gaps in diagnosis and treatment across Europe