title: Tokenism in patient engagement.
abstract: Patient engagement throughout research is a way to generate more relevant patient-important research questions, methods and results with the ultimate aim of facilitating translation of research into practice. Tokenism is defined as the practice of making perfunctory or symbolic efforts to engage communities or patients.
  
  
  
  We wanted to explore how tokenism might influence engaging patients in research to help researchers work towards more genuine engagement.
  
  
  
  The Community Clinician Advisory Group and Patient and Clinician Engagement program held a workshop at the 2015 North American Primary Care Research Group meeting titled 'How Do We Move beyond Tokenism in Patient Engagement?' Patients, clinicians and academic researchers contributed examples of genuine and token engagement characteristics based on personal experience and knowledge. Data were iteratively collated and categorized into domains and items.
  
  
  
  Examples of genuine and token engagement were categorized into three domains: Methods/Structure of engagement, Intent and Relationship building. Members with experience in patient-engaged research projects felt that longitudinal engagement was a key element to effectively translating research into local community and practice.
  
  
  
  The group (i) highly valued genuine intent and relationship building as elements to combat tokenism; (ii) noted that early genuine attempts at engagement may superficially resemble tokenism as researchers build enduring and trusting relationships with patient/community partners and (iii) emphasized the importance of seeking and utilizing patient experiences throughout research. These observations may contribute to more formal methods to help researchers (and reviewers) evaluate where engagement processes sit along the 'genuine-token' continuum.
authors.affiliation: Wisconsin Research and Education Network, Department of Family Medicine and Community Health, University of Wisconsin School of Medicine and Public Health, Madison, WI, USA.
authors.forename: David L
authors.initials: DL
authors.lastname: Hahn
authors.affiliation: Wisconsin Research and Education Network, Department of Family Medicine and Community Health, University of Wisconsin School of Medicine and Public Health, Madison, WI, USA.
authors.forename: Amanda E
authors.initials: AE
authors.lastname: Hoffmann
authors.affiliation: High Plains Research Network Community Advisory Council, Denver, CO, USA.
authors.forename: Maret
authors.initials: M
authors.lastname: Felzien
authors.affiliation: Department of Family Medicine, University of Kansas School of Medicine, Kansas City, KS, USA.
authors.forename: Joseph W
authors.initials: JW
authors.lastname: LeMaster
authors.affiliation: Department of Family Medicine and Public Health Sciences, Wayne State University, Detroit, MI, USA and.
authors.forename: Jinping
authors.initials: J
authors.lastname: Xu
authors.affiliation: Oregon Rural Practice-Based Research Network, Oregon Health and Science University, Portland, OR, USA.
authors.forename: Lyle J
authors.initials: LJ
authors.lastname: Fagnan
mesh_terms: D055812:Community-Based Participatory Research / Q000379:methods*; D006801:Humans; D033182:Intention; D010358:Patient Participation; D010817:Physician-Patient Relations
keywords: Culture and disease/cross-cultural issues; doctor–patient relationship; faculty development; health literacy; primary care.