Patient-Reported Outcomes White Papers

Tools for ResearchThe Collaboratory Patient-Reported Outcomes (PRO) Core and the PCORnet Patient-Reported Outcomes Task Force have developed the following white papers in keeping with their mission to provide and develop strategies, tools, and resources related to the measurement, collection, and analysis of patient-generated health information, including patient-reported outcomes data.

Challenges and Opportunities for the Use of NIH-Supported PRO Tools in Comparative Effectiveness Research

Despite a growing number of validated tools that are useful for collecting data on patient-report outcomes (PROS), substantial barriers continue to prevent their widespread uptake and use across clinical-care settings. This in turn prevents these toolsets from being applied in pragmatic clinical trials and comparative effectiveness research efforts.

As part of an effort to identify and overcome these barriers and enhance access to PRO data available in electronic systems, representatives from the National Institutes of Health (NIH) Health Care Systems Research Collaboratory PRO Core convened a meeting involving clinician-scientists, PRO methodologists, psychometricians, representatives from National Institutes of Health (NIH) and the U.S. Food and Drug Administration (FDA), and a patient representative. The findings and recommendations resulting from this two-day workshop, which was held in Baltimore, Maryland on January 8–9, 2015, are available at the link below.

This work is funded by the Office Of The Director, National Institutes Of Health and supported by the NIH Common Fund through a cooperative agreement (U54 AT007748) with the NIH Health Care Systems Research Collaboratory. The views presented here are solely the responsibility of the authors and do not necessarily represent the official views of the National Institutes of Health.
Originally published on June 30, 2015.

 

Strategies for Overcoming Barriers to the Implementation of Patient-Reported Outcomes Measures

The Collaboratory Patient-Reported Outcomes (PRO) Core developed this white paper to provide practical strategies for overcoming barriers to the implementation of PRO measures in the healthcare setting to support both patient care and comparative effectiveness research (CER). The paper offers clinician, patient, and administrative perspectives and provides real-world examples and strategies for overcoming these obstacles to PRO implementation. The full text of the white paper can be found here: Strategies-for-Overcoming-Barriers-to-PROs_V1.0.

This work is funded by the Office Of The Director, National Institutes Of Health and supported by the NIH Common Fund through a cooperative agreement (U54 AT007748) with the NIH Health Care Systems Research Collaboratory. The views presented here are solely the responsibility of the authors and do not necessarily represent the official views of the National Institutes of Health.
Originally published on September 19, 2014.

Reaching Consensus on Patient-Centered Definitions: a Report from the Patient-Reported Outcomes PCORnet Task Force

In this white paper, the PCORnet Patient-Reported Outcomes Task Force codifies terms for data contributed by patients with the intent to operationalize these terms within PCORnet. Three terms are recommended for data contributed by patients:

PATIENT-REPORTED OUTCOME (PRO): a report that comes directly from the patient about the status of a patient’s health condition without amendment or interpretation of the patient’s response by a clinician or anyone else.

PATIENT-CENTERED OUTCOMES: outcomes that matter to patients

PATIENT-GENERATED HEALTH DATA: health-related data (such as health history, symptoms, biometric data, treatment history, lifestyle choices, and other information) that are created, recorded, gathered, or inferred by or from patients or their designees (i.e., care partners or those who assist them) to help address a health concern. Patient-generated health data include patient-reported outcomes.

The full text of the white paper can be found here: Reaching Consensus on Patient-Centered Definitions: a Report from the Patient-Reported Outcomes PCORnet Task Force_V2.0  

This paper was supported by a grant from the Patient-Centered Outcomes Research Institute (PCORI) (P122013-499A). The views expressed are those of the authors and do not necessarily represent the views of PCORI, its Board of Governors, or PCORnet.
Originally published on April 9, 2015.

Impact of Patient-Reported Outcomes on Clinical Practice

The Collaboratory Patient-Reported Outcomes (PRO) Core examines the available evidence to understand when PROs have the potential to provide significant value to patient care.

Patient-reported outcome (PRO) measures can be used in pragmatic clinical trials to assess endpoints that are meaningful to stakeholders. These measures are also used to support patient care, although there is mixed evidence about effects of PROs on clinical care. This white paper examines the literature to determine the extent to which PROs have (1) improved patient-provider communication, clinical decision-making, and patient satisfaction; (2) enhanced patient outcomes; and (3) helped ensure better quality of care from a healthcare systems perspective.

The full text of the white paper can be found here: Impact of Patient-Reported Outcomes on Clinical Practice_V1.0

This work is funded by the Office Of The Director, National Institutes Of Health and supported by the NIH Common Fund through a cooperative agreement (U54 AT007748) with the NIH Health Care Systems Research Collaboratory. The views presented here are solely the responsibility of the authors and do not necessarily represent the official views of the National Institutes of Health.
Originally published on January 19, 2016.

 

 

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