Abstract
Directly involving patients and families in care improvement increasingly is viewed as an important component of patient-centered care. To assess the extent to which practices actually involve patients, we surveyed 112 patient-centered medical home practices in twenty-two states. Nearly all of these practices sought patient feedback. However, only 29percent involved patients and families as advisers and sought feedback through surveys, and only 32percent involved patients in a continuing role in quality improvement. Interviews showed that practices that highly value patient involvement overcame barriers to ongoing patient participation. We argue that a cultural shift is needed in how practices view patients as partners, not just in areas such as personal responsibility and self-management, but also in quality improvement and governance. Practices must gain more experience and see more examples of the benefits of engaging patients, and they may need more incentives and support for engaging them.
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