108: Pediatric Patient Family Engagement with Clinical Research

Active patient engagement in research.

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Family engagement regarding the critically ill patient.

The Institute of Medicine strongly recommends a health care system that supports family members. Nowhere is the need for family-centered care greater than with critically ill patients. Simplistically, family-centered care is primarily about communication. Unfortunately, family perception of communication in the intensive care unit (ICU) is quite poor. This article reviews some strategies to imp...

Innovative Programs Highlighting Patient and Family Engagement.

T he 7th International Conference on Patientand Family-Centered Care was held July 25-27, 2016, in New York City. Attended by over 1,000 individuals representing some 348 institutions and organizations from across the United States and around the world, the conference included 120 presentations and 89 posters on topics of patientand family-centered care. A listing of all conference presentation...

Crowdsourcing and patient engagement in research.

Emerging Guidelines for Patient Engagement in Research.

There is growing recognition that involving patients in the development of new patient-reported outcome measures helps ensure that the outcomes that matter most to people living with health conditions are captured. Here, we describe and discuss different experiences of integrating patients as full patient research partners (PRPs) in outcomes research from multiple perspectives (e.g., researcher...