Democratizing Patient Data: A Story of Patient Empowerment

Thursday, March 8, 2018, 1:00PM–2:00PM PT Location: Palazzo K; Session 251

The most critical member of the care team, the patient, is being left out. Their data are not captured in a way that can be leveraged at home by patients, or in the clinical setting by providers. There are few patient-facing tools designed to support their daily care at home, or capture how they are doing between appointments. This patient-caregiver session shares the challenges encountered when managing complex chronic conditions, and the strategies and technologies they leveraged to become active partners with their providers. This unique session offers both patient and caregiver insights into managing pediatric chronic conditions, the value of patient-generated data, tangible strategies and solutions used to support recovery, and an update of the patient empowerment research that was inspired by their experience.

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