Information transfer: what do decision makers want and need from researchers?

<p>Abstract</p> <p>Purpose</p> <p>The purpose of this study was to undertake a systematic assessment of the need for research-based information by decision-makers working in community-based organizations. It is part of a more comprehensive knowledge transfer and exchange strategy that seeks to understand both the content required and the format/methods by which such information should be presented.</p> <p>Methods</p> <p>This was a cross-sectional telephone survey. Questions covered current practices, research use, and demographic information, as well as preferences for receiving research information. Three types of organizations participated: Children's Treatment Centres of Ontario (CTCs); Ontario Community Care Access Centres (CCACs); and District Health Councils (DHCs). The analysis used descriptive statistics and analyses of variance (ANOVA) to describe and explore variations across organizations.</p> <p>Results</p> <p>The participation rate was 70%. The highest perception of barriers to the use of research information was reported by the CCAC respondents, followed by CTCs and DHCs. The CTCs and DHCs reported greater use of research evidence in planning decisions as compared to the CCACs. Four sources of information transfer were consistently identified. These were websites, health-related research journals, electronic mail, and conferences and workshops. Preferred formats for receiving information were executive summaries, abstracts, and original articles.</p> <p>Conclusion</p> <p>There were a number of similarities across organization type with respect to perceived barriers to research transfer, as well as the types of activities the organizations engaged in to promote research use in decision-making. These findings support the importance of developing interactive, collaborative knowledge transfer strategies, as well as the need to foster relationships with health care decision-makers, practitioners and policymakers.</p

Point prevalence and motor function of children and adolescents with cerebral palsy in Scandinavia and Scotland: a CP‐North study

AIM: To describe the point prevalence of cerebral palsy (CP) and distribution of gross and fine motor function in individuals registered in a CP-North surveillance programme.METHOD: Aggregate data of individuals with CP aged 6 to 19 years, sex, CP subtype, and gross and fine motor function levels were collected from each programme. Overall and age-specific point prevalence of CP was calculated for each programme using 95% confidence intervals. Logistic regression was used to estimate prevalence and CP subtypes with age as the covariate variable. Pearson χ2 tests were used to compare the distributions of CP subtypes, Gross Motor Function Classification System (GMFCS) levels, and Manual Ability Classification System (MACS) levels by age and between programmes.RESULTS: Among 3 759 138 individuals residing in Scandinavia and Scotland, 8278 had a diagnosis of CP (57-59% were males). The overall point prevalence of CP ranged from 2.13 to 2.32 per 1000 residents. Age-specific prevalence in each programme varied with the exception of Denmark. While the proportions of bilateral spastic CP were similar between programmes, there were variations in all other CP subtypes and in GMFCS and MACS levels.INTERPRETATION: While the results of this study may reflect real differences in CP populations between countries, they may not be clinically relevant. The variations may be attributable to differences in the year when each programme was first established, different data collection methods, and country-specific governmental policies

Measure of Processes of Care: a review of 20 years of research

Aim: This article reviews literature on findings from the Measure of Processes of Care (MPOC) to assess family-centred services. Method: Systematic searches for papers citing MPOC in both PubMed and Web of Science identified 107 articles. Fifty-five met the criterion for inclusion in this review in that they reported MPOC data. Results: Over the past 20 years MPOC has been used in settings additional to the children's treatment centres for which it was designed; used in 11 countries and translated into 14 languages; and used to measure change in respondents' perceptions over time. MPOC findings have also informed our understanding of the provision of family-centred services. Overall, parents report that service providers do a good job of providing respectful, comprehensive services in partnership with families, but that there remain limitations in the provision of general information, an area for improvement. Finally, MPOC has been shown to correlate with various other measures related to the provision of family-centred services. Interpretation: The MPOC ‘family’ of measures can be used to assess both families' and service providers' experiences and perceptions of the family-centredness of services received/provided. Opportunities abound for further research enquiries

Systematic overviews of partnership principles and strategies identified from health research about spinal cord injury and related health conditions: A scoping review

Scoping review. To identify and provide systematic overviews of partnership principles and strategies identified from health research about spinal cord injury (SCI) and related health conditions. Four health electronic databases (Medline, Embase, CINAHL, PsycINFO) were searched from inception to March 2019. We included articles that described, reflected, and/or evaluated one or more collaborative research activities in health research about SCI, stroke, multiple sclerosis, Parkinson’s disease, amputation, cerebral palsy, spina bifida, amyotrophic lateral sclerosis, acquired brain injury, or wheelchair-users. Partnership principles (i.e. norms or values) and strategies (i.e. observable actions) were extracted and analyzed using directed qualitative content analysis. We included 39 articles about SCI (n = 13), stroke (n = 15), multiple sclerosis (n = 5), amputation (n = 2), cerebral palsy (n = 2), Parkinson’s disease (n = 1), and wheelchair users (n = 1). We extracted 110 principles and synthesized them into 13 overarching principles. Principles related to building and maintaining relationships between researchers and research users were most frequently reported. We identified 32 strategies that could be applied at various phases of the research process and 26 strategies that were specific to a research phase (planning, conduct, or dissemination). We provided systematic overviews of principles and strategies for research partnerships. These could be used by researchers and research users who want to work in partnership to plan, conduct and/or disseminate their SCI research. The findings informed the development of the new SCI Integrated Knowledge Translation Guiding Principles (www.iktprinciples.com) and will support the implementation of these Principles within the SCI research system