Tokenism in patient engagement

TLDR

Patient engagement throughout research generates more relevant patient‑important questions, methods, and results, ultimately facilitating translation into practice. This study explores how tokenism—perfunctory or symbolic engagement—affects patient involvement, aiming to guide researchers toward more authentic engagement. During a 2015 workshop, patients, clinicians, and researchers shared examples of genuine versus token engagement, and the data were iteratively collated into domains of methods/structure, intent, and relationship building. Participants found longitudinal engagement essential, highlighted genuine intent and relationship building as antidotes to tokenism, and suggested that these insights could inform formal methods for assessing engagement along a genuine‑token continuum.

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.