Search

This article discusses inclusion in social work from an organizational perspective and suggests that organizational education (a new discipline and profession focusing on learning organizations) opens up new perspectives for organizing inclusion. In making this argument, the authors start with a notion of social inclusion that is connected to theories of social justice, social exclusion, and democracy. Against the background of historical and recent research on child and youth care in Germany and Switzerland, it is shown how organizations place clients in powerless positions. To this day, diversity in society is viewed as problematic for organizations, particularly when it comes to interpreting clients’ situations. However, learning can only take place in organizations if clients have a chance to articulate their experiences with organizations and participate in decision‐making from more powerful positions. The authors therefore plea for organizations in social work and other social services to become more democratized, to further a form of inclusion that leads to more social justice.

BackgroundSecondary use of clinical data for biomedical research purposes holds great potential for various types of noninterventional, data-driven studies. Patients’ willingness to support research with their clinical data is a crucial prerequisite for research progress. ObjectiveThe aim of the study was to learn about patients’ attitudes and expectations regarding secondary use of their clinical data. In a next step, our results can inform the development of an appropriate governance framework for secondary use of clinical data for research purposes. MethodsA questionnaire was developed to assess the willingness of patients with cancer to provide their clinical data for biomedical research purposes, considering different conditions of data sharing and consent models. The Cancer Registry of the German federal state of Baden-Württemberg recruited a proportionally stratified random sample of patients with cancer and survivors of cancer based on a full census. ResultsIn total, 838 participants completed the survey. Approximately all participants (810/838, 96.7%) showed general willingness to make clinical data available for biomedical research purposes; however, they expected certain requirements to be met, such as comparable data protection standards for data use abroad and the possibility to renew consent at regular time intervals. Most participants (620/838, 73.9%) supported data use also by researchers in commercial companies. More than half of the participants (503/838, 60%) were willing to give up control over clinical data in favor of research benefits. Most participants expressed acceptance of the broad consent model (494/838, 58.9%), followed by data use by default (with the option to opt out at any time; 419/838, 50%); specific consent for every study showed the lowest acceptance rate (327/838, 39%). Patients expected physicians to share their data (763/838, 91.1%) and their fellow patients to support secondary use with their clinical data (679/838, 81%). ConclusionsAlthough patients’ general willingness to make their clinical data available for biomedical research purposes is very high, the willingness of a substantial proportion of patients depends on additional requirements. Taking these perspectives into account is essential for designing trustworthy governance of clinical data reuse and sharing. The willingness to accept the loss of control over clinical data to enhance the benefits of research should be given special consideration.