Susan J Bartlett1, Sara Ahmed2. 1. Department of Medicine, McGill University/McGill University Health Center (RVH), 687 Pine Ave W R4.29, Montreal, Québec, 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. Department of Medicine, McGill University/McGill University Health Center (RVH), 687 Pine Ave W R4.29, Montreal, Québec, Canada H3A 1A1; School of Physical and Occupational Therapy, McGill University, 3654 Prom Sir-William-Osler, Montreal, Québec, Canada H3G 1Y5; Centre de recherche interdisciplinaire en réadaptation (CRIR), 2275 Laurier Ave. E, Montreal, Quebec, Canada H2H 2N8.
Abstract
BACKGROUND: Patient-centered health care, where we design and deliver care to address the needs and preferences of patients, represents an important paradigm shift. Patient-reported outcomes (PROs) are critical to capture the patient voice, understand how illness and treatments affect people, and establish how well services and treatments address what matters most to patients. OBJECTIVE: Originally developed for use in research, PROs are now used to monitor individuals and populations, manage care, evaluate services and providers, and inform policy. However, moving PROs beyond research settings incurs considerable methodological, organizational, technological, and ethical considerations. National collaborative networks of researchers, clinicians, patients, and other stakeholders can address these challenges by coordinating development, creating standards for use, sharing costs and delivery platforms, and improving widespread uptake of core sets of measures to better inform health care decisions and improve outcomes. DISCUSSION: We introduce eight papers from researchers, clinicians, patients, and decision makers who participated in deliberations around creating a national network to accelerate the application and harmonized use of PROs in Canada. They offer a snap shot of the strategies that pioneers and innovative thinkers are using to integrate the patient voice into comprehensive care, research, and health policy planning of chronic diseases.
BACKGROUND:Patient-centered health care, where we design and deliver care to address the needs and preferences of patients, represents an important paradigm shift. Patient-reported outcomes (PROs) are critical to capture the patient voice, understand how illness and treatments affect people, and establish how well services and treatments address what matters most to patients. OBJECTIVE: Originally developed for use in research, PROs are now used to monitor individuals and populations, manage care, evaluate services and providers, and inform policy. However, moving PROs beyond research settings incurs considerable methodological, organizational, technological, and ethical considerations. National collaborative networks of researchers, clinicians, patients, and other stakeholders can address these challenges by coordinating development, creating standards for use, sharing costs and delivery platforms, and improving widespread uptake of core sets of measures to better inform health care decisions and improve outcomes. DISCUSSION: We introduce eight papers from researchers, clinicians, patients, and decision makers who participated in deliberations around creating a national network to accelerate the application and harmonized use of PROs in Canada. They offer a snap shot of the strategies that pioneers and innovative thinkers are using to integrate the patient voice into comprehensive care, research, and health policy planning of chronic diseases.
Authors: Richard Sawatzky; Eric K H Chan; Bruno D Zumbo; Sara Ahmed; Susan J Bartlett; Clifton O Bingham; William Gardner; Jeffrey Jutai; Ayse Kuspinar; Tolulope Sajobi; Lisa M Lix Journal: J Clin Epidemiol Date: 2016-12-18 Impact factor: 6.437
Authors: Vanessa K Noonan; Anne Lyddiatt; Patrick Ware; Susan B Jaglal; Richard J Riopelle; Clifton O Bingham; Sabrina Figueiredo; Richard Sawatzky; Maria Santana; Susan J Bartlett; Sara Ahmed Journal: J Clin Epidemiol Date: 2017-04-20 Impact factor: 6.437
Authors: Hiroshi Mamiya; Lisa M Lix; William Gardner; Susan J Bartlett; Sara Ahmed; David L Buckeridge Journal: J Clin Epidemiol Date: 2017-04-21 Impact factor: 6.437
Authors: Prakash Jayakumar; Meredith G Moore; Kenneth A Furlough; Lauren M Uhler; John P Andrawis; Karl M Koenig; Nazan Aksan; Paul J Rathouz; Kevin J Bozic Journal: JAMA Netw Open Date: 2021-02-01
Authors: Matthew L Cohen; Aaron J Boulton; Alyssa M Lanzi; Elyse Sutherland; Rebecca Hunting Pompon Journal: Qual Life Res Date: 2021-02-08 Impact factor: 4.147