Susan J Bartlett1, James Witter2, David Cella3, Sara Ahmed4. 1. Department of Medicine, McGill University/McGill University Health Center, 687 Pine Avenue W R4.29, Montreal, QC, Canada H3A 1A1; Division of Rheumatology, Johns Hopkins School of Medicine, 5200 Eastern Avenue #4100, Baltimore, MD 21224, USA. Electronic address: susan.bartlett@mcgill.ca. 2. Division of Skin and Rheumatic Diseases, NIAMS, One Democracy Plaza, 6701 Democracy Boulevard, Suite 800, Bethesda, MD 20892-4872, USA. 3. Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, 633 N. Street Clair Suite 1900, Chicago, IL 60611, USA. 4. Department of Medicine, McGill University/McGill University Health Center, 687 Pine Avenue W R4.29, Montreal, QC, Canada H3A 1A1; School of Physical and Occupational Therapy, McGill University, 3654 Prom Sir-William-Osler, Montreal, QC, Canada H3G 1Y5; Centre de recherche interdisciplinaire en réadaptation (CRIR), 2275 Laurier Ave E, Montreal, Quebec, Canada H2H 2N8.
Abstract
BACKGROUND: Patient-reported outcome (PRO) data are beneficial to a range of stakeholders including patients, clinicians, researchers, national funding and regulatory agencies, health system administrators, and policymakers. OBJECTIVE: Because stakeholders represent diverse groups and needs, it is challenging to reach consensus on how to advance PRO development and harmonize data across settings to enable use for multiple secondary purposes. Collaborative national networks can facilitate the sharing of expertise, resources, and necessary infrastructure; create development, use, and reporting standards; optimize formats to efficiently store and transfer data; and disseminate tools and information for widespread uptake. DISCUSSION: In the United States, the National Institutes of Health's Patient-Reported Outcomes Measurement Information System offers an example of how collaborators can work across distances to form essential partnerships, create a common vision, and leverage technology to accelerate the development and testing of universal PROs that are broadly applicable across health conditions and settings.
BACKGROUND:Patient-reported outcome (PRO) data are beneficial to a range of stakeholders including patients, clinicians, researchers, national funding and regulatory agencies, health system administrators, and policymakers. OBJECTIVE: Because stakeholders represent diverse groups and needs, it is challenging to reach consensus on how to advance PRO development and harmonize data across settings to enable use for multiple secondary purposes. Collaborative national networks can facilitate the sharing of expertise, resources, and necessary infrastructure; create development, use, and reporting standards; optimize formats to efficiently store and transfer data; and disseminate tools and information for widespread uptake. DISCUSSION: In the United States, the National Institutes of Health's Patient-Reported Outcomes Measurement Information System offers an example of how collaborators can work across distances to form essential partnerships, create a common vision, and leverage technology to accelerate the development and testing of universal PROs that are broadly applicable across health conditions and settings.
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