Name
From Tokenism to Partnership: Developing a Dynamic Model for Patient Stakeholder Engagement in Health Research
Authors

Allison J. Dalton, George Washington University School of Medicine and Health Sciences
Gaetano R. Lotrecchiano, George Washington University School of Medicine and Health Sciences

Date
Wednesday, July 30, 2025
Time
11:15 AM - 11:30 AM (EDT)
Schedule Block
Session 3: Academia & Professional Development for Integrators
Presentation Category
Scientometrics, Data Analysis, and Indicators
Description

Patient engagement (PE) in the conduct of health research is an increasing priority in the era of the patient focused drug development initiative. PE in health research is characterized by meaningful and active interaction between patients and researchers throughout the research process where patient experiential knowledge is valued in decision-making. While there is growing agreement on what constitutes meaningful PE, teams with patient stakeholders face barriers to achieving meaningful PE. One such challenge is tokenism; a state characterized by team interactions that lack depth and from which no real integration of different knowledge types is achieved. Or, put simply, the sense that the PE occurred merely to "check a box." According to Arnstein’s (1969) model of citizen engagement, tokenism composes lower rungs of a metaphorical ladder and partnership composes higher rungs on the ladder. Although this model was created for the context of civic engagement of community members, it has been widely adopted by health researchers in the context of PE in health research where PE is synonymous with the partnership rung of the ladder. However, Arnstein’s model is missing several key components (1) it does not describe how teams move between rungs, (2) the use of a ladder portrays teaming as a linear process, and (3) it does not incorporate the influence of time. Therefore, an updated model is needed to convey the complexity of teaming with patient stakeholders in the conduct of health research. Existing theories, models, and frameworks were identified using snowball sampling and synthesized to create a model for patient stakeholder teaming. The combined model describes how teams with patient stakeholders transition from tokenism to partnership over time based on evolving attitudes (e.g. trust and cohesion), shared beliefs (e.g., communication and collaboration), and cognitions (e.g., shared mental models and information and knowledge exchange) as described by Salas et al. (2008). Future research will be needed to validate the model among teams conducting health research with patient stakeholders.

Abstract Keywords
Tokenism, Partnership, Team Dynamics, Health Research Collaboration, Patient Engagement