title: The Untapped Potential of Patient and Family Engagement in the Organization of Critical Care.
abstract: OBJECTIVE
  There is growing interest in patient and family participation in critical care-not just as part of the bedside, but as part of educational and management organization and infrastructure. This offers tremendous opportunities for change but carries risk to patients, families, and the institution. The objective is to provide a concise definitive review of patient and family organizational participation in critical care as a high-risk population and other vulnerable groups. A pragmatic, codesigned model for critical care is offered as a suggested approach for clinicians, researchers, and policy-makers.
  
  
  METHODS
  To inform this review, a systematic search of Ovid Medline, PubMed, and Embase was undertaken in April 2016 using the MeSH terms: patient participation and critical care. A second search was undertaken in PubMed using the terms: patient participation and organizational models to search for other examples of engagement in vulnerable populations. We explicitly did not seek to include discussions of bedside patient-family engagement or shared decision-making.
  
  
  METHODS
  Two reviewers screened citations independently. Included studies either actively partnered with patients and families or described a model of engagement in critical care and other vulnerable populations.
  
  
  METHODS
  Data or description of how patient and family engagement occurred and/or description of model were extracted into a standardized form.
  
  
  RESULTS
  There was limited evidence of patient and family engagement in critical care although key recommendations can be drawn from included studies. Patient and family engagement is occurring in other vulnerable populations although there are few described models and none which address issues of risk.
  
  
  CONCLUSIONS
  A model of patient and family engagement in critical care does not exist, and we propose a pragmatic, codesigned model that takes into account issues of psychologic safety in this population. Significant opportunity exists to document processes of engagement that reflect a changing paradigm of healthcare delivery.
authors.affiliation: 1Physiotherapy Department, Western Health, St. Albans, Victoria, Australia. 2Clinical Education Unit, Austin Health, Heidelberg, Victoria, Australia. 3Critical Care Patient, Austin Health, Heidelberg, Victoria, Australia. 4Family Member of a Critical Care Patient, Austin Health, Heidelberg, Victoria, Australia. 5Division of Pulmonary & Critical Care, Department of Medicine, University of Michigan, Ann Arbor, MI. 6Center for Clinical Management Research, VA Ann Arbor Health System, Ann Arbor, MI.
authors.forename: Kimberley J
authors.initials: KJ
authors.lastname: Haines
authors.forename: Phillipa
authors.initials: P
authors.lastname: Kelly
authors.forename: Peter
authors.initials: P
authors.lastname: Fitzgerald
authors.forename: Elizabeth H
authors.initials: EH
authors.lastname: Skinner
authors.forename: Theodore J
authors.initials: TJ
authors.lastname: Iwashyna
mesh_terms: D003422:Critical Care / Q000458:organization & administration*; D003657:Decision Making; D005190:Family; D006801:Humans; D008962:Models, Theoretical; D010358:Patient Participation; D057240:Patient Preference; D024382:Professional Role; D012307:Risk Factors; D013315:Stress, Psychological / Q000523:psychology