Patient-Centered Outcome Measures

Start measuring what matters most to patients.

Set Resources

You will be able to find all your implementation resources within each set page. These include the following documents:

Manuscript

The manuscript is published in a peer-reviewed journal and describes the work that was done to develop the Set of Patient-Centered Outcome Measures, and discusses any key considerations and gaps in the field as well as any limitations of the work done.

Data Dictionary

The Data Dictionary is the excel file that lists all the variables that need to be collected as part of the Set of Patient-Centered Outcome Measures, including timepoints and inclusion criteria for each variable.

Flyer

The Flyer provides a visual summary – the wheel of outcomes – of the Set of Patient-Centered Outcome Measures, and some detail regarding how each outcome is tracked, and also lists the Working Group of experts that were involved in the development of the Set.

Reference Guide

The Reference Guide is a detailed document that describes the set of Patient-Centered Outcome Measures, including the outcomes, the outcome measures, the case mix variables, and the timepoints for data collection. In the appendix, a full data dictionary of all the variables is included. This provides the level of detail required to begin implementing data collection for the Set.

IT-Ready Sets

ICHOM's Sets of Patient-Centered Outcome Sets have been mapped to SNOMED and LOINC, allowing you to begin collecting the relevant PROMS and clinical information immediately. In addition, our Sets are in the process of being made compatible with FIHR/HL7 Standards and some are available now.

To find out more - email info@ICHOM.org

Select a family of Sets below

Cardiometabolic

Congenital Anomalies

Gastrointestinal

Infectious Disease

Life-Course

Maternal & Child Health

Mental Health

Musculoskeletal

Neurology

Oncology

Ophthalmological

Renal, Urogenital

In Progress

Externally Developed Sets

About Patient-Centered Outcome Measures

Defining outcomes that matter most

To date, we have published 45 Sets of Patient-Centered Outcome Measures covering different conditions and for specific patient populations.

By creating a standardized list of the outcomes based on the patient’s priorities along with instruments and time points for measurement, we can ensure the patient remains at the centre of their care. For valid comparison, we know the importance of risk adjustment, so we also standardize these case mix variables.

When developing a Set, we bring together a multidisciplinary group of patient representatives, leading physicians and registry leaders to prioritize a core set of outcomes, which take into consideration outcomes from different treatments. Through the implementation of these Sets, you can begin to measure, analyze and improve outcomes achieved in the delivery of care. We are continually reviewing our published Sets.

Our Methodology

We bring together global teams of patient advocates, healthcare professionals and researchers to define outcomes in our Sets.

These teams, or “Working Groups” will take a systematic approach to reviewing existing measures from a provider, registry and patient perspective, prioritise those which are most important, and propose they be collated together in an ICHOM Set. The methodology for all of our Sets is published in peer-reviewed journals. Watch the video below to find out more.

Patient-Physician Partnership

ICHOM takes a unique approach to defining health outcomes. All of our patient representatives have been treated for, or have cared for someone who has lived with, the condition they are evaluating. We also bring together leading physicians from across the globe who specialize in treating this condition. The ICHOM team facilitates as physicians and patients discuss – and agree upon – the outcomes that matter most.

Multidisciplinary approach

Physician leaders, patient advocacy members, registry leaders, and patients, help define:

  • Various treatment options
  • Outcomes resulting from treatments
  • Which health outcomes matter most to patients
  • Speciality experts across multiple disciplines

International Leaders

A standardized approach to comparing outcomes across cultures enables patients and caregivers to learn about which providers deliver the best outcomes and to begin to understand why providers in other nations achieve similar outcomes when they use vastly different treatments

Our Policies

Our Work

Contact Us

399 Boylston St. 6th floor
Boston MA, 02116
United States of America
Contact us

TOP