Agenda Setting on FAIR Guidelines in the European Union and the Role of Expert Committees

The FAIR Guidelines were conceptualised and coined as guidelines for Findable, Accessible, Interoperable and Reusable(FAIR) data at a conference held at the Lorentz Centre in Leiden in 2014. A relatively short period of time after this conference, the FAIR Guidelines made it onto the public policy agenda of the European Union. Following the concept of Kingdon, policy entrepreneurs played a critical role in creating a policy window for this idea to reach the agenda by linking it to the policy of establishing a European Open Science Cloud(EOSC). Tracing the development from idea to policy, this study highlights the critical role that expert committees play in the European Union. The permeability of the complex governance structure is increased by these committees, which allow experts to link up with the institutions and use the committees to launch new ideas. The High Level Expert Groups on the EOSC provided the platform from which the FAIR Guidelines were launched, and this culminated in the adoption of the FAIR Guidelines as a requirement for all European-funded science. As a result, the FAIR Guidelines have become an obligatory part of data management in European-funded research in 2020 and are now followed by other funders worldwide.

The Outpatient Clinic Visit: Expectations and Fulfilment of Perceived Needs in Adolescents with Type 1 Diabetes

Background: To make outpatient visits for adolescents with diabetes successful, it is important for health care professionals to meet the adolescents’ needs and wishes. Aims: The aim is to investigate adolescents’ expectations of an outpatient diabetes clinic visit in comparison to what was deemed to be delivered and contrast this outcome in adolescents with self-reported high- and low-diabetes distress respectively. Methods: All adolescents in Sweden with type 1 diabetes, aged 15 to 18 years, were identified via The National Pediatric Diabetes Registry (SWEDIABKIDS) and asked to complete an online questionnaire regarding their expectations and the support received during the outpatient diabetes clinic visit. Results: 453 adolescents completed the survey. Boys’ expectations of discussion topics were mainly met while girls, especially those with diabetes distress, felt their discussion needs were not met regarding quality-of-life aspects. Conclusions: Although adolescents’ expectations are in general met during the diabetes outpatient clinic visit, aspects related to living with diabetes are not being met especially among female adolescents who reported diabetes distress. This study shows a gender difference both regarding expected discussion topics and what was deemed covered. Practice Implications: A multi-professional, individual person-centred care approach is needed at the diabetes outpatient clinic. This paper proposes that agenda setting performed by the adolescent, and agreed by the physician, prior to the outpatient clinic visit could facilitate individualized care and better meet the adolescents’ needs in a shared decision-making process.