No One Listens to Me": Understanding Recovery When Patients
Cannot Speak for Themselves
I was the co-lead for a 2-year project with the American Institute for Research with Dr. Trudy Mallinson on person-centered measurement. “No One Listens to Me”: Understanding Recovery When Patients Cannot Speak for Themselves. This project team of researchers and caregivers advanced knowledge of what constitutes meaningful recovery in unconscious adults who have experienced a traumatic brain injury. The team developed a patient- and caregiver-centered strategy for creating meaningful indicators of change during rehabilitation. The team designed indicators that promote transparent, shared decision-making by facilitating conversations between clinicians and caregivers on behalf of vulnerable patients who cannot advocate for themselves during recovery.
