Patient and public involvement in the build-up of COVID-19 testing in Sweden

Background Patient and public involvement in healthcare can be particularly challenging during crises such as the COVID-19 pandemic. Objective The aims of the study, which focuses on COVID-19 testing in Sweden, were to explore (1) how, or to what extent, patients and members of the public were involved in decisions about the organization of COVID-19 testing during the first year of pandemic and (2) whether this was seen as feasible or desirable by regional and national stakeholders. Methods A qualitative interview study was conducted with key organizational stakeholders at three national agencies and within three Swedish regions (n = 16). Results There had been no patient and public involvement activities in the area of COVID-19 testing. The regions had, however, tried to respond to demands or critiques from patients and the public along the way and to adapt the services to respond to their preferences. The need for rapid decision-making, the uncertainty about whom to involve, as well as a hesitation about the appropriateness of involving patients and the public contributed to the lack of involvement. Conclusion Future studies on patient and public involvement during crises should address what structures need to be in place to carry out involvement successfully during crises and when to use activities with varying degrees of power or decision-making authority for patients and members of the public. Patient or Public Contribution Fifteen members of the public contributed with short reflections on the study findings.