More data equals better health? Ethical considerations for collecting and using data from patient-reported measures

Patient-reported measures (PRMs) are used to collect data on patients’ perspectives of their health care to 1) centre patients’ perspectives and voices, as their lived experience and knowledge of their health is unique and essential, 2) support quality improvement and safety monitoring at the organisational level, and 3) inform policy making and resourcing decisions. On the face of it, these three goals seem reasonable and important. However, I argue that the project of PRMs has significant ethical challenges which limit how meaningful, valuable and actionable these data can be, risking what might be called a ‘data graveyard’.