From hierarchies of exclusion to participant-led inclusion: A qualitative research agenda for health information literacy

Health information literacy links people to the information sources and ways of knowing that they need to make informed decisions about wellbeing. Qualitative research methods provide a powerful way to centre how people use information to learn about health as well as the conditions and social structures that enable and constrain information practice. This approach challenges health information literacy's more traditional focus on the measurement of normative, approved skills. Collaborative enquiry analysis of three recent studies into critical health literacy and children, chronic illness (irritable bowel syndrome) and vaccine hesitancy establishes a research agenda for qualitative health information literacy research. Producing four themes, including positioning information settings as health literate organisations, literacies for life, scaling up infrastructure and empowerment, the research agenda outlines directions for future theoretical, practical, and methodological health information literacy research. •Qualitative methods provide insight into informed decision making but have been underused in health information literacy.•Collaborative narrative enquiry into recent qualitative health information literacy studies produced key research themes.•Future health information literacy topics include organisations, literacies for life, infrastructure and empowerment.