- Montreal Accord Paper 9: Anonymization and Ethics Considerations for Capturing and Sharing Patient-Reported Outcomes
- Montreal Accord Paper 8: Patient Reported Outcomes (PRO) in Electronic Health Records Can Inform Clinical and Policy Decisions
- Montreal Accord Paper 6: Creating National Initiatives to Support Patient Reported Outcomes (PRO) Development and Use
- Montreal Accord Paper 5: Patient-Reported Outcomes Can Be Linked to Epidemiologic Measures to Monitor Populations and Inform Public Health Decisions
- Montreal Accord Paper 4: Patient-Reported Outcomes Can Inform Clinical Decision Making in Chronic Care
- Montreal Accord Paper 3: Patient Reported Outcomes (PRO) Can Facilitate Shared Decision-Making and Guide Self-Management
- Montreal Accord Paper 2: Terminology Proposed to Measure What Matters in Health
- Montreal Accord Paper 1: Pragmatic Trials and Real-World Evidence
Creating National Initiatives to Support Patient Reported Outcomes (PRO) Development and Use
Paper 6: The PROMIS Example
Bartlett SJ, Witter J, Cella D, Ahmed S
Background
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 System (PROMIS) 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.
J Clin Epidemiol. 2017 Apr 19. pii: S0895-4356(17)30411-0. doi: 10.1016/j.jclinepi.2017.04.015
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