Outcomes Measurement and Survey Core Facility

Research Design Consultation Services

• Assistance with development of new protocols including research objectives, endpoints, and hypotheses
• Measure selection and implementation (e.g., mode of administration, assessment platform)
• Survey development
• Sampling and recruitment strategies utilizing practices to support equity and inclusion in research
• Analysis methods

Programming & Analysis Services

• Digital patient-reported outcome administration tools
• Scoring algorithms
• Psychometric and statistical analysis and interpretation

Research Operations Services

• Facilitation of translations of measures and surveys
• Qualitative methods (e.g., focus groups, cognitive interviewing)

Several organizations provide information on outcome measurement for use in research and clinical care.

ECOG-ACRIN Cancer Research Group

ECOG-ACRIN is a membership-based scientific organization that designs and conducts cancer research. The Patient-Reported Outcomes (PRO) Working Group created a reference library with materials available to ECOG-ACRIN members including:

• Recommendations for PROs to use in ECOG-ACRIN studies (e.g., PROMIS, FACIT, PRO-CTCAE)
• Sample study protocols
• Guidance for manuscripts including PROs
• Validation studies for recommended PROs

Patient-Reported Outcomes Tools Engaging Users and Stakeholders (PROTEUS) Consortium

The PROTEUS Consortium is an international group of PRO researchers and representatives from patient, clinician, research, health system, and regulatory work. They provide tools for using PROs in clinical trials addressing:

• Selecting measures
• Developing protocols
• Analyzing and reporting data
• Displaying results
• Writing grants

HealthMeasures

HealthMeasures is the dissemination center for Patient-Reported Outcomes Measurement Information System (PROMIS) measures. The website includes:

• Downloadable, respondent-ready PROMIS measures via Search & View Measures
• Measure recommendations for cancer and other health conditions
• Instructions for calculating and interpreting scores
• Considerations for research protocols

ePROs for Clinical Care

Through a grant from the Agency for Healthcare Research and Quality (AHRQ), a multi-institutional group created evidence-based guidance and resources for electronic PROs (ePROs) used in care delivery within a health system.

Patient-Reported Outcome Measures at Northwestern Medicine

Accessible through NMInteractive (NM login required)

The Quality & Patient Safety team developed and curated resources on using patient-reported outcome (PRO) measures within Epic. This includes

• Video demonstrating patient interface completing PROs and finding results in MyNM
• Video demonstrating clinician interface reviewing PRO results wihtin Epic
• Implementation steps
• PRO resoures for physicians
• PRO resources for project administrators
• Analytics resources

All manuscripts and grants presenting work supported by this core should include the following acknowledgement:

"This work was supported by the Northwestern University Outcomes Measurement and Survey Core and a Cancer Center Support Grant (NCI CA060553)."