Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries.

BACKGROUND: With new technologies, health data can be collected in a variety of different clinical, research, and public health contexts, and then can be used for a range of new purposes. Establishing the public's views about digital health data sharing is essential for policy makers to develop effective harmonization initiatives for digital health data governance at the European level. OBJECTIVE: This study investigated public preferences for digital health data sharing. METHODS: A discrete choice experiment survey was administered to a sample of European residents in 12 European countries (Austria, Denmark, France, Germany, Iceland, Ireland, Italy, the Netherlands, Norway, Spain, Sweden, and the United Kingdom) from August 2020 to August 2021. Respondents answered whether hypothetical situations of data sharing were acceptable for them. Each hypothetical scenario was defined by 5 attributes ("data collector," "data user," "reason for data use," "information on data sharing and consent," and "availability of review process"), which had 3 to 4 attribute levels each. A latent class model was run across the whole data set and separately for different European regions (Northern, Central, and Southern Europe). Attribute relative importance was calculated for each latent class's pooled and regional data sets. RESULTS: A total of 5015 completed surveys were analyzed. In general, the most important attribute for respondents was the availability of information and consent during health data sharing. In the latent class model, 4 classes of preference patterns were identified. While respondents in 2 classes strongly expressed their preferences for data sharing with opposing positions, respondents in the other 2 classes preferred not to share their data, but attribute levels of the situation could have had an impact on their preferences. Respondents generally found the following to be the most acceptable: a national authority or academic research project as the data user; being informed and asked to consent; and a review process for data transfer and use, or transfer only. On the other hand, collection of their data by a technological company and data use for commercial communication were the least acceptable. There was preference heterogeneity across Europe and within European regions. CONCLUSIONS: This study showed the importance of transparency in data use and oversight of health-related data sharing for European respondents. Regional and intraregional preference heterogeneity for "data collector," "data user," "reason," "type of consent," and "review" calls for governance solutions that would grant data subjects the ability to control their digital health data being shared within different contexts. These results suggest that the use of data without consent will demand weighty and exceptional reasons. An interactive and dynamic informed consent model combined with oversight mechanisms may be a solution for policy initiatives aiming to harmonize health data use across Europe.

Preferences of the Public for Sharing Health Data: Discrete Choice Experiment.

BACKGROUND: Digital technological development in the last 20 years has led to significant growth in digital collection, use, and sharing of health data. To maintain public trust in the digital society and to enable acceptable policy-making in the future, it is important to investigate people's preferences for sharing digital health data. OBJECTIVE: The aim of this study is to elicit the preferences of the public in different Northern European countries (the United Kingdom, Norway, Iceland, and Sweden) for sharing health information in different contexts. METHODS: Respondents in this discrete choice experiment completed several choice tasks, in which they were asked if data sharing in the described hypothetical situation was acceptable to them. Latent class logistic regression models were used to determine attribute-level estimates and heterogeneity in preferences. We calculated the relative importance of the attributes and the predicted acceptability for different contexts in which the data were shared from the estimates. RESULTS: In the final analysis, we used 37.83% (1967/5199) questionnaires. All attributes influenced the respondents' willingness to share health information (P<.001). The most important attribute was whether the respondents were informed about their data being shared. The possibility of opting out from sharing data was preferred over the opportunity to consent (opt-in). Four classes were identified in the latent class model, and the average probabilities of belonging were 27% for class 1, 32% for class 2, 23% for class 3, and 18% for class 4. The uptake probability varied between 14% and 85%, depending on the least to most preferred combination of levels. CONCLUSIONS: Respondents from different countries have different preferences for sharing their health data regarding the value of a review process and the reason for their new use. Offering respondents information about the use of their data and the possibility to opt out is the most preferred governance mechanism.

Bullying and Harassment in Downsized Workplaces: What Can We Learn from the 2008 Icelandic Economic Collapse?

Research shows that bullying is a significant workplace issue. A previous study showed increased sickness-related absences among municipality employees during the Icelandic economic crisis in 2008. This led to the following research questions: has bullying and/or harassment increased between the time points of the study up to seven years after the crisis? Did bullying and/or harassment change depending on downsizing? Are quantitative job demands, role conflicts and social support connected to bullying and/or harassment at work and if so, how? The study is based on a four-wave longitudinal balanced panel dataset consisting of those who work within the education and care services operated by Icelandic municipalities. It was seen that bullying and harassment had increased between the time points of the study. Furthermore, employees in downsized workplaces, workplaces with higher quantitative job demands, more role conflicts and less support were more likely to experience bullying and/or harassment than employees in other workplaces. Since the effects may prevail for several years, the study demonstrates that the consequences of downsizing need to be carefully considered and that managers must be supported in that role. As economic crises tend to occur periodically, presently due to COVID-19, the knowledge is both of theoretical and practical importance.

Changes in occupational mental and physical health and health symptoms during the economic recession.

BACKGROUND: In 2008, many Western countries faced a great economic recession, the result of which was increased unemployment and reduced public expenditure. OBJECTIVE: This article focuses on changes in the self-reported mental and physical health and health symptoms of the remaining employees of Icelandic municipalities who worked within the educational system and the care service during the economic recession. We examine gender differences in health and differences between downsized workplaces and workplaces where no downsizing occurred and differences between workplaces with heavy workload and light workload. METHODS: The study is based on a balanced panel online survey and focus groups. RESULTS: The main finding is that both the mental and physical health of employees deteriorated year by year between 2010, 2011 and 2013 in all workplaces although the downsized workplaces and workplaces with heavy workloads fared worse. At the same time, public expenditure on the health care system was reduced. CONCLUSIONS: We hope that our results encourage further studies in the field and that they will be taken into account when dealing with prevention and rehabilitation initiatives.