BackgroundGetting research into policy and practice in healthcare is a recognised, world-wide concern. As an attempt to bridge the gap between research and practice, research funders are requesting more interdisciplinary and collaborative research, while actual experiences of such processes have been less studied. Accordingly, the purpose of this study was to gain more knowledge on the interdisciplinary, collaborative and partnership research process by investigating researchers’ experiences of and approaches to the process, based on their participation in an inventive national research programme. The programme aimed to boost collaborative and partnership research and build learning structures, while improving ways to lead, manage and develop practices in Swedish health and social services.MethodsInterviews conducted with project leaders and/or lead researchers and documentation from 20 projects were analysed using directed and conventional content analysis.ResultsCollaborative approaches were achieved by design, e.g. action research, or by involving practitioners from several levels of the healthcare system in various parts of the research process. The use of dual roles as researcher/clinician or practitioner/PhD student or the use of education designed especially for practitioners or ‘student researchers’ were other approaches. The collaborative process constituted the area for the main lessons learned as well as the main problems. Difficulties concerned handling complexity and conflicts between different expectations and demands in the practitioner’s and researcher’s contexts, and dealing with human resource issues and group interactions when forming collaborative and interdisciplinary research teams. The handling of such challenges required time, resources, knowledge, interactive learning and skilled project management.ConclusionsCollaborative approaches are important in the study of complex phenomena. Results from this study show that allocated time, arenas for interactions and skills in project management and communication are needed during research collaboration to ensure support and build trust and understanding with involved practitioners at several levels in the healthcare system. For researchers, dealing with this complexity takes time and energy from the scientific process. For practitioners, this puts demands on understanding a research process and how it fits with on-going organisational agendas and activities and allocating time. Some of the identified factors may be overlooked by funders and involved stakeholders when designing, performing and evaluating interdisciplinary, collaborative and partnership research.Electronic supplementary materialThe online version of this article (10.1186/s12961-018-0322-0) contains supplementary material, which is available to authorized users.

Objective. To develop a provisional definition for the evaluation of response to therapy in juvenile dermatomyositis (DM) based on the Paediatric Rheumatology International Trials Organisation juvenile DM core set of variables. Methods. Thirty-seven experienced pediatric rheumatologists from 27 countries achieved consensus on 128 difficult patient profiles as clinically improved or not improved using a stepwise approach (patient's rating, statistical analysis, definition selection). Using the physicians' consensus ratings as the "gold standard measure," chi-square, sensitivity, specificity, false-positive and-negative rates, area under the receiver operating characteristic curve, and kappa agreement for candidate definitions of improvement were calculated. Definitions with kappa values >0.8 were multiplied by the face validity score to select the top definitions. Results. The top definition of improvement was at least 20% improvement from baseline in 3 of 6 core set variables with no more than 1 of the remaining worsening by more than 30%, which cannot be muscle strength. The second-highest scoring definition was at least 20% improvement from baseline in 3 of 6 core set variables with no more than 2 of the remaining worsening by more than 25%, which cannot be muscle strength (definition P1 selected by the International Myositis Assessment and Clinical Studies group). The third is similar to the second with the maximum amount of worsening set to 30%. This indicates convergent validity of the process. Conclusion. We propose a provisional data-driven definition of improvement that reflects well the consensus rating of experienced clinicians, which incorporates clinically meaningful change in core set variables in a composite end point for the evaluation of global response to therapy in juvenile DM.

BackgroundSeveral studies show that good metabolic control is important for children and adolescents with type 1 diabetes. In Sweden, there are large differences in mean haemoglobin A1c (HbA1c) in different hospitals and difficulties implementing national guidelines in everyday practice. This study shows how the participation in an improvement collaborative could facilitate improvements in the quality of care by paediatric diabetes teams. The Swedish paediatric diabetes quality registry, SWEDIABKIDS was used as a tool and resource for feedback and outcome measures.MethodsTwelve teams at paediatric diabetes centres, caring for 30% (2302/7660) of patients in Sweden, participated in an 18-month quality improvement program. Each team defined treatment targets, areas needing improvement, and action plans. The main outcome was the centre patients' mean HbA1c levels, but other clinical variables and change concepts were also studied. Data from the previous six months were compared with the first six months after starting the program, and the long-term follow up after another eleven months.ResultsAll centres reduced mean HbA1c during the second and third periods compared with the first. The mean reduction for all was 3·7 mmol/mol (p<0.001), compared with non-participating centres who improved their mean HbA1c with 1·7 mmol/mol during the same period. Many of the participating centres reduced the frequency of severe hypoglycaemia and/or ketoacidosis, and five centres reached their goal of ensuring that all patients had some sort of physical activity at least once weekly. Change concepts were, for example, improved guidelines, appointment planning, informing the patients, improving teamwork and active use of the registry, and health promotion activities.ConclusionsBy involving paediatric diabetes teams in a quality improvement collaborative together with access to a quality register, the quality of paediatric diabetes care can improve, thereby contributing to a reduced risk of late complications for children and adolescents with diabetes.

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