INTERNATIONAL CONSORTIUM FOR HEALTHOUTCOMES MEASUREMENT INC.

Their core work

ICHOM develops standardized sets of health outcomes that matter most to patients for specific medical conditions — defining not how to treat disease, but how to know whether treatment worked from the patient's perspective. Their core product is methodology: rigorous, internationally validated frameworks that specify which outcomes clinical researchers must measure to make trial results comparable across sites, systems, and countries. In H2020, they contributed patient-reported outcome measurement (PROM) expertise to large European cardiovascular and stroke clinical trials, ensuring data captured reflects patient experience alongside physician metrics. They operate as a specialist methodological partner, bringing a globally recognized framework for value-based healthcare into research consortia that lack in-house outcomes measurement expertise.

What they specialise in

How they've shifted over time

ICHOM's two projects start just one year apart (2017 and 2018), so the keyword shift reflects two parallel disease areas rather than a true strategic pivot over time. Their early project anchored in established cardiovascular conditions — heart failure, atrial fibrillation, acute coronary syndrome — where ICHOM already had published Standard Sets. Their second project moved into acute cerebrovascular disease (stroke, thrombectomy), where the outcomes vocabulary explicitly names PROM and value-based healthcare as organizing concepts, suggesting a broadening of their standard-setting work into neurological acute care. The underlying direction is consistent: ICHOM is expanding its library of condition-specific outcome standard sets from chronic cardiac disease toward acute vascular interventions.

ICHOM is broadening its standard-setting work from chronic cardiovascular conditions toward acute vascular and neurological interventions, making them a relevant partner for any clinical trial in stroke, brain injury, or procedural cardiology that needs internationally validated patient-centered endpoints.

How they like to work

ICHOM joins exclusively as a participant — they have never coordinated an H2020 project — which reflects their role as a specialist methodology supplier rather than a research program leader. Despite only two projects, they have engaged with 36 unique partners across 15 countries, indicating they are embedded in very large multi-site clinical consortia where their outcome measurement expertise is one of many moving parts. This pattern suggests working with ICHOM means buying access to a specific, well-defined deliverable — a validated outcomes framework — rather than a generalist research partner who adapts to whatever the consortium needs.

With 36 unique partners across 15 countries from just two projects, ICHOM operates inside large European clinical research networks, averaging roughly 18 institutional partners per consortium. Their Boston base combined with consistent European project participation gives them a transatlantic footprint rare among H2020 NGO partners.

What sets them apart

ICHOM occupies a narrow but globally recognized niche: they are one of the few organizations anywhere that focuses exclusively on defining what health outcomes should be measured, rather than conducting the measurement or delivering the treatment. This makes them nearly irreplaceable in clinical trials where regulators, payers, or funders require patient-centered endpoints — no other consortium member typically has this specific methodological mandate. As a US-based NGO with EU project experience, they also serve as a bridge between American value-based care movements (e.g., Porter-Teisberg frameworks) and European clinical research standards.

Highlights from their portfolio

• BigData Heart
  The largest of ICHOM's two projects (EUR 319,375), applying big data analytics to cardiovascular outcomes across heart failure, atrial fibrillation, and acute coronary syndrome — one of the first EU trials to combine large-scale digital data infrastructure with standardized patient-reported outcome sets.
• TENSION
  A randomized controlled trial testing thrombectomy in stroke patients beyond standard treatment windows — scientifically high-stakes, and notable for explicitly naming PROM and value-based healthcare as core components alongside the clinical intervention endpoints.