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.

COVID-19 Testing in Sweden During 2020–Split Responsibilities and Multi-Level Challenges

Sweden's use of soft response measures early in the COVID-19 pandemic received a good deal of international attention. Within Sweden, one of the most debated aspects of the pandemic response has been COVID-19 testing and the time it took to increase testing capacity. In this article, the development of and the debate surrounding COVID-19 testing in Sweden during 2020 is described in detail, with a particular focus on the coordination between national and regional actors in the decentralised healthcare system. A qualitative case study was carried out based on qualitative document analysis with a chronological presentation. To understand COVID-19 testing in Sweden, two aspects of its public administration model emerged as particularly important: (i) the large and independent government agencies and (ii) self-governing regions and municipalities. In addition, the responsibility principle in Swedish crisis management was crucial. Overall, the results show that mass testing was a new area for coordination and involved a number of national and regional actors with partly different views on their respective roles, responsibilities and interpretations of the laws and regulations. The description shows the ambiguities in the purpose of testing and the shortcomings in communication and cooperation during the first half of 2020, but after that an increasing consistency among the crucial actors. During the first half of 2020, testing capacity in Sweden was limited and reserved to protect the most vulnerable in society. Because mass testing for viruses is not normally carried out by the 21 self-governing regions responsible for healthcare and communicable disease prevention, and the Public Health Agency of Sweden stated that there was no medical reason to test members of the public falling ill with COVID-like symptoms, the responsibility for mass testing fell through the cracks during the first few months of the pandemic. This article thus illustrates problems associated with multi-level governance in healthcare during a crisis and illustrates the discrepancy between the health service's focus on the individual and the public health-oriented work carried out within communicable disease control.

COVID-19 Testing in Sweden During 2020-Split Responsibilities and Multi-Level Challenges.

Sweden's use of soft response measures early in the COVID-19 pandemic received a good deal of international attention. Within Sweden, one of the most debated aspects of the pandemic response has been COVID-19 testing and the time it took to increase testing capacity. In this article, the development of and the debate surrounding COVID-19 testing in Sweden during 2020 is described in detail, with a particular focus on the coordination between national and regional actors in the decentralised healthcare system. A qualitative case study was carried out based on qualitative document analysis with a chronological presentation. To understand COVID-19 testing in Sweden, two aspects of its public administration model emerged as particularly important: (i) the large and independent government agencies and (ii) self-governing regions and municipalities. In addition, the responsibility principle in Swedish crisis management was crucial. Overall, the results show that mass testing was a new area for coordination and involved a number of national and regional actors with partly different views on their respective roles, responsibilities and interpretations of the laws and regulations. The description shows the ambiguities in the purpose of testing and the shortcomings in communication and cooperation during the first half of 2020, but after that an increasing consistency among the crucial actors. During the first half of 2020, testing capacity in Sweden was limited and reserved to protect the most vulnerable in society. Because mass testing for viruses is not normally carried out by the 21 self-governing regions responsible for healthcare and communicable disease prevention, and the Public Health Agency of Sweden stated that there was no medical reason to test members of the public falling ill with COVID-like symptoms, the responsibility for mass testing fell through the cracks during the first few months of the pandemic. This article thus illustrates problems associated with multi-level governance in healthcare during a crisis and illustrates the discrepancy between the health service's focus on the individual and the public health-oriented work carried out within communicable disease control.