The need for family and patient input into clinical care has become well established in pediatrics. More recently, the value of such input into pediatric research has also become more accepted with many funding opportunities now requiring such engagement. Although lacking in a universally accepted definition, Patient and Public Involvement and Engagement can be generally defined as the inclusion of patients and families in research endeavors. Involvement can be passive—as in a lecture provided by the investigator to the family—or deliberative—with families engaged in all aspects of the research program. Examples of family engagement include setting research priorities, contributing to study design elements, reviewing patient and family facing materials, and assisting in dissemination of research implications.1,2 Given the unique aspects of pediatric research,3 family input may be of particular value. However, identifying the optimal method of soliciting such input in a meaningful manner that is respectful of the family participant time and effort remains a challenge. This may be particularly true in the setting of critical care research with a paucity of published data to guide such efforts. To better understand how to secure and utilize family input into pediatric critical care research, we recently reviewed our experience with the Collaborative Pediatric Critical Care Research Network (CPCCRN) and surveyed key stakeholders.

The CPCCRN, supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development, has conducted multicenter pediatric critical care research since 2005.4 As the Network evolved, it became increasingly important to ensure that the research questions and outcome variables prioritized by investigators aligned with those valued by patients and families. This recognition occurred alongside the growing value attributed to family participation in pediatric intensive care unit (PICU) processes, including daily rounds, invasive procedures, and cardiopulmonary resuscitation.5,6 Further, data suggest that family input can improve research processes, such as consent language and adherence to protocols.7 Thus, a growing interest in engaging families in PICU research planted the seed for what has become the CPCCRN Family Network Collaborative (FNC).

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