A protocol for stakeholder engagement in head and neck cancer pragmatic trials

Abstract

Meaningful engagement with stakeholders in research demands intentional approaches. This paper describes the development of a framework to guide stakeholder engagement as research partners in a pragmatic trial proposed to evaluate behavioral interventions for dysphagia in head and neck cancer patients. We highlight the core principles of stakeholder engagement including representation of all perspectives, meaningful participation, respectful partnership with stakeholders, and accountability to stakeholders; and describe how these principles were operationalized to engage relevant stakeholders throughout the course of a large clinical trial.

Keywords: Deglutition disorders; Head and neck neoplasms; Patient participation; Pragmatic clinical trial; Speech-language pathology; Stakeholder participation.