The Canada PRO Network
There is growing consensus that the patients’ voice not only complements clinical and administrative data, but is essential to broad evaluations of health policy, outcomes, and health related quality of life (HRQL). The goal of a national Patient Reported Outcomes (PRO) initiative is to facilitate harmonized and scientifically rigorous use of PROs in Canadian research, clinical practice and population health monitoring.
Need for a national network. A national network is needed to consolidate resources and coordinate ongoing efforts of multiple stakeholders including patients, families, clinicians and scientists with expertise in measurement, research, clinical care, public health, population monitoring, healthcare evaluation, health economics and policy.
Canada PRO Meeting. An initial meeting of representatives from stakeholder groups was held at McGill University in Montreal, Canada on November 4-5, 2013. The goal of the meeting was to identify priority areas for PRO use in clinical practice, research, and population monitoring; review methods, infrastructure, and resources required to develop and sustain a national PRO network; and coordinate efforts with similar international initiatives.
Highlights and findings from the Montreal Canada-PRO meeting are summarized in a forthcoming special issue of the Journal of Clinical Epidemiology (release: Fall 2016).
Ten articles provide exemplars of using PROs at local and national levels and implementation considerations including:
- training clinicians how PRO results can enhance understanding of the patient perspective enabling care
- supporting self-management activities of people living with chronic disease
- monitoring the health of populations, identifying epidemics
- health care service evaluation and policy planning
Articles also summarize discussions from small and large group addressing:
- what to measure, and which measures to collect to minimize patient burden and ensure data are useful
- standards for identifying optimal PROs/PROMs and developing new ones
- national initiatives to share expertise and leverage resources
- collection at the point of service to enhance validity, reduce bias, and minimize missing data
- infrastructure and data management concerns to reduce complexity, facilitate harmonization,