The Power of Standardisation: ICHOM’s Standard Sets of Patient-Reported Health Outcomes

The Clinician recently interviewed Greg Robinson of ICHOM about his organisation’s mission to provide patient-centered outcome measurement sets as a way to facilitate global interoperability and valued-based care adoption.

A Chief Technology Officer by title, Greg’s role straddles the line between CTO and Chief Strategy Officer as he, together with his colleagues and the ICHOM board, navigate ICHOM’s mission to move the needle on value-based healthcare on a global scale.

The Clinician is proud to be the official technology and implementation partner for ICHOM in Asia Pacific and the Middle East.

 At the International Consortium for Health Outcomes Measurement (ICHOM), we focus on the development of outcome measurements. We call them ‘patient-centred outcome measurements’ because they put the patient at the centre unit of analysis.

“I've been in this game for 25 years: starting off on the payer side of doing HEDIS reporting and sentinel studies, making my way through payer and provider organisations, in analytics and operations and various other roles. The one thing that's always stood out to me has been the deficiency of the level of analysis in healthcare.” – Greg Robinson

Billing systems, from which electronic health records (EHRs) emanated, focus on dynamics of care relevant to payers. They are less focused on the generation of knowledge truly relevant to a provider at the point of care. Of course, it's useful to know things like age, gender, diabetic status, geographic location, but those systems aren’t providing the full compendium of information that would help drive differential patterns of treatment, i.e. personalised medicine to improve outcomes.

The measurement sets that ICHOM has established focus on disease burden in a way that represents outcomes that matter to patients. We’re on an ongoing mission to continually evolve these measurement sets, so we include patient-reported outcome measures and we integrate those with data that can be, and are, commonly derived from EHR systems.

ICHOM gathers international working groups of clinical experts, as well as patient advocacy groups and patient representatives, in the development of these measures. And we’ve seen these measures go on to global levels of recognition and become the basis for publications in leading journals—there's a strong legitimacy around our approach. We put a strong emphasis on trying to help the healthcare community, from the value-based healthcare perspective, recognise that the patient is truly the centre of the universe, it’s not the billing or the mechanisms that drive billing.  

Instead, it’s about increasing patient health and patient status as a function of understanding not only the EHR dynamics (diagnostics and treatments), but also how patients are responding and providing information about their treatment, and in terms of what makes such standardisation possible.

At ICHOM we're in our 10th year of operations now. Prior to last year, we focused on developing these sets and then giving the elements that should be measured to the provider, which could have led to variation in what elements might have been picked out of each relative EHR. Now, we have really evolved and moved our technology needle by mapping each of the elements to standard ontology—SNOMED, LOINC, ICD-10—to both reduce the data collection burden and also increase or even eliminate the variation as to what data are collected. So that, for example, when we say ‘blood pressure’ it is specific down to systolic pressure, at rest, according to this particular standardised code.

To further enable both interoperability and the gathering of data, ICHOM has also created JSON representations of the sets and are currently in the process of putting those JSON sets on FHIR. We're also working with HL7 to put our breast cancer set through the standardised HL7 process, which has been a really successful and interesting experience.

Putting the ICHOM patient-centred outcome measure sets on FHIR works towards that overall push of interoperability, increasing both the usefulness of the data collected using our measures while also reducing the data collection burden that's generally faced—that's really where we at ICHOM see FHIR as an accelerator.


Supporting the digital implementation of ICHOM’s standard sets, The Clinician’s platform helps healthcare organisations to capture, analyse and act on patient-centred outcomes data at scale—unlocking the potential of value-based care.

Aligned with leading health interoperability standards, including HL7 v2.x, FHIR and openEHR, our ZEDOC platform seamlessly integrates with existing clinical, administrative and financial systems.

Contact The Clinician to learn more about ICHOM set implementation

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Video: Discussing interoperability with Greg Robinson - Chief Technology Officer at ICHOM

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Data Usage Facilitated by Interoperability is the Key to Value-Based Care