Montreal Accord on Patient-Reported Outcomes (PROs) use series – Paper 9: anonymization and ethics considerations for capturing and sharing patient reported outcomes
Manuscript
Arbuckle, L., Moher, E., Bartlett, S. J., Ahmed, S., & El Emam, K. (2017). Montreal Accord on Patient-Reported Outcomes (PROs) use series–Paper 9: anonymization and ethics considerations for capturing and sharing patient reported outcomes. Journal of clinical epidemiology, 89, 168-172.
Background
Patient-reported outcomes (PROs) are collected with consent for care; however, using the data for any other purpose requires consent for that additional purpose, or the anonymization of the data. Collecting explicit consent to use this data for secondary purposes, before the patient completes a PRO, can also bias the responses.
Objective
We consider the ethical and security issues related to the collection of data at the point of care or in the population and the aggregation and integration of PRO data with administrative databases to facilitate decision making and comparative effectiveness research.