Conversing with theory in context: frameworking patient involvement in health research agenda setting

Patient involvement in health research is increasingly supported by frameworks to design and evaluate meaningful practices and policies. However, designers of patient involvement can face tensions between protecting a framework’s principles and fostering local co-design. Sensitized by the concepts of ‘technologies of democracy’ and ‘situated intervention,’ this study untangled how a framework (the Dialogue Model) was used in the design of a patient involvement initiative that aimed to co-create an agenda for the Huntington Knowledge Network Netherlands. We argue that designing patient involvement could benefit from ‘frameworking’: the explicit navigation between different scenarios (i.e. design options and their consequences), while diffracting their competing rationales, to politically establish hierarchies in the doing and negotiate the direction for action. By proposing this definition for frameworking, we aim to articulate an ideal practice of conversing with theory in context, thereby inspiring reflexive patient involvement in health research.