Rachel Grob et al., Patients' roles in governance of learning: Results from a qualitative study of 16 learning healthcare systems, 6 Learning Health Sys. (2022).
Abstract
Patient and family engagement has been identified as key to fulfilling Learning
Healthcare Systems' (LHSs') promise as a model for improving clinical care, catalyzing
research, and controlling costs. Little is known, however, about the state of patient
engagement in the learning mission of these systems or about what governance
structures and processes facilitate such engagement. Here, we report on an interview
study of 99 patient and employee leaders in 16 systems. We found both variable
levels of engagement and broad agreement that shared governance of learning
remains a work in progress. We also identified a range of practices that can support
or thwart development of an organizational culture conducive to shared governance,
including transparency, capacity building, infrastructure investment, leadership,
attention to diversity of patient partners, and committee structures. In LHSs with
most sophisticated shared governance, both employees and patients contribute to
building a democratic learning culture.
Keywords
governance, learning health systems, patient engagement
