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An open and transparent process to select ELIXIR Node Services as implemented by ELIXIR-UK.

ABSTRACT: ELIXIR is the European infrastructure established specifically for the sharing and sustainability of life science data. To provide up-to-date resources and services, ELIXIR needs to undergo a continuous process of refreshing the services provided by its national Nodes. Here we present the approach taken by ELIXIR-UK to address the advice by the ELIXIR Scientific Advisory Board that Nodes need to develop " mechanisms to ensure that each Node continues to be representative of the Bioinformatics efforts within the country". ELIXIR-UK put in place an open and transparent process to identify potential ELIXIR resources within the UK during late 2015 and early to mid-2016. Areas of strategic strength were identified and Expressions of Interest in these priority areas were requested from the UK community. Criteria were established, in discussion with the ELIXIR Hub, and prospective ELIXIR-UK resources were assessed by an independent committee set up by the Node for this purpose. Of 19 resources considered, 14 were judged to be immediately ready to be included in the UK ELIXIR Node's portfolio. A further five were placed on the Node's roadmap for future consideration for inclusion. ELIXIR-UK expects to repeat this process regularly to ensure its portfolio continues to reflect its community's strengths.

SUBMITTER: Hancock JM

PROVIDER: S-EPMC5265702 | biostudies-literature | 2016

REPOSITORIES: biostudies-literature

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An open and transparent process to select ELIXIR Node Services as implemented by ELIXIR-UK.

Hancock John M JM Game Alf A Ponting Chris P CP Goble Carole A CA

F1000Research 20161221

ELIXIR is the European infrastructure established specifically for the sharing and sustainability of life science data. To provide up-to-date resources and services, ELIXIR needs to undergo a continuous process of refreshing the services provided by its national Nodes. Here we present the approach taken by ELIXIR-UK to address the advice by the ELIXIR Scientific Advisory Board that Nodes need to develop " <i>mechanisms to ensure that each Node continues to be representative of the Bioinformatics ...[more]

PMID: 28149502

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Project description:BackgroundGlobal health implementing organizations benefit most from health impact estimation models that isolate the individual effects of distributed products and services - a feature not typically found in intervention impact models, but which allow comparisons across interventions and intervention settings. Population Services International (PSI), a social marketing organization, has developed a set of impact models covering seven health program areas, which translate product/service distribution data into impact estimates. Each model's primary output is the number of disability-adjusted life-years (DALYs) averted by an intervention within a specific country and population context. This paper aims to describe the structure and inputs for two types of DALYs averted models, considering the benefits and limitations of this methodology.MethodsPSI employs two modeling approaches for estimating health impact: a macro approach for most interventions and a micro approach for HIV, tuberculosis (TB), and behavior change communication (BCC) interventions. Within each intervention country context, the macro approach determines the coverage that one product/service unit provides a population in person-years, whereas the micro approach estimates an individual's risk of infection with and without the product/service unit. The models use these estimations to generate per unit DALYs averted coefficients for each intervention. When multiplied by program output data, these coefficients predict the total number of DALYs averted by an intervention in a country.ResultsModel outputs are presented by country for two examples: Water Chlorination DALYs Averted Model, a macro model, and the HIV Condom DALYs Averted Model for heterosexual transmission, a micro model. Health impact estimates measured in DALYs averted for PSI interventions on a global level are also presented.ConclusionsThe DALYs averted models offer implementing organizations practical measurement solutions for understanding an intervention's contribution to improving health. These models calculate health impact estimates that reflect the scale and diversity of program operations and intervention settings, and that enable comparisons across health areas and countries. Challenges remain in accounting for intervention synergies, attributing impact to a single organization, and sourcing and updating model inputs. Nevertheless, these models demonstrate how DALYs averted can be viably used by the global health community as a metric for predicting intervention impact using standard program output data.

Project description:PurposeLinked maternity, neonatal and maternal mental health records were created to support research into the early life origins of physical and mental health, in mothers and children. The Early Life Cross Linkage in Research (eLIXIR) Partnership was developed in 2018, generating a repository of real-time, pseudonymised, structured data derived from the electronic health record systems of two acute and one Mental Health Care National Health Service (NHS) Provider in South London. We present early descriptive data for the linkage database and the robust data security and governance structures, and describe the intended expansion of the database from its original development. Additionally, we report details of the accompanying eLIXIR Research Tissue Bank of maternal and neonatal blood samples.ParticipantsDescriptive data were generated from the eLIXIR database from 1 October 2018 to 30 June 2019. Over 17 000 electronic patient records were included.Findings to date10 207 women accessed antenatal care from the 2 NHS maternity services, with 8405 deliveries (8772 infants). This diverse, inner-city maternity service population was born in over 170 countries with an ethnic profile of 46.1% white, 19.1% black, 7.0% Asian, 4.1% mixed and 4.1% other. Of the 10 207 women, 11.6% had a clinical record in mental health services with 3.0% being treated during their pregnancy. This first data extract included 947 infants treated in the neonatal intensive care unit, of whom 19.1% were postnatal transfers from external healthcare providers.Future plansElectronic health records provide potentially transformative information for life course research, integrating physical and mental health disorders and outcomes in routine clinical care. The eLIXIR database will grow by ~14 000 new maternity cases annually, in addition to providing child follow-up data. Additional datasets will supplement the current linkage from other local and national resources, including primary care and hospital inpatient data for mothers and their children.

Project description:Background: In recent years, much effort was made to improve access to sexual and reproductive health services (SRH) to adolescents and youths in Ethiopia particularly through establishment of youth friendly service (YFS) corners as part of the existing health care facilities. The existing evidences focused on investigating the utilization of SRH services at YFS established areas alone. There is a dearth of evidence which compares the SRH service use between the YFS implemented and non-implemented areas so that evidences can be drawn to suggest on the successes of the expansion of youth friendly corners.Methods: A school-based comparative cross-sectional study was conducted by employing a multistage cluster sampling method. A pre-tested self-administered questionnaire was used to collect data and the collected data were entered in to Epidata version 4.4.1 software and then exported to SPSS version 20 for analysis. ?2 test was used to see a significant difference in SRH service utilization among adolescents from YFS implemented and non-implanted areas. The association between the SRH services utilization and the independent variables were examined using binary logistic regression. Finally, variables having p-value less than or equal to 0.05 in the multivariable logistic regression model were considered as statistically significant.Results: There were a significant difference in the rate of SRH service utilization between YFS implemented (33.8%) and YFS non- implemented (9.9%) areas (?2?=?37.49, p?<?0.001). Higher educational status of mothers (AOR?=?2.588, 95% CI: 1.220, 5.491), having open discussion with family (AOR?=?3.175, 95%CI: 1.624, 6.206), having good knowledge (AOR?=?4.511, 95% CI: 2.458, 8.278) and having positive attitude (AOR?=?5.084, 95% CI: 2.764, 9.352) were factors positively associated with SRH services utilization.Conclusion: Compared with high schools from YFS implemented areas, the SRH service utilization was significantly lower among students from high schools where health facilities did not implement YFS. There is a need for enhancing efforts to establish YFS corners by the stakeholders at different hierarchies at places where the centers were not established so that SRH service uptake would be improved. In addition, it is better to promote open discussion with adolescents at the family level, and emphasis should be given for women education in the broad sense. Furthermore, wide-range awareness creation strategies should be used to address poor knowledge and negative attitude.

Project description:Process evaluation studies are recommended to improve our understanding of underlying mechanisms related to clinicians, patients, context and intervention delivery that may impact on trial or program results and on their potential transferability to practice. This paper aims to document the translation of a type-2 diabetes (T2D) prevention program into the routine context of several primary care centers, assessing process indicators related to clinician adoption, patient recruitment, exposure to the intervention components and baseline characteristics.An observational descriptive process evaluation study was conducted of the 2.5-year implementation of the Prevention of Diabetes in Euskadi cluster randomized trial in 14 primary care centers of the Basque Health Service (Osakidetza). The clinical intervention consisted of three components: (1) risk screening, (2) an educational intervention promoting healthy lifestyles, and (3) remote support (follow-up). A passive dissemination strategy of providing training and materials was used to translate the intervention into practice. All non-diabetic patients aged 45 to 70 years who were identified as being at high risk of developing T2D were eligible for study inclusion. The RE-AIM framework guided the process evaluation.Overall, 31.4 % of family physicians and 57.6 % of nurses participated in the study, while 4170 out of 67,293 (6.2 %) targeted patients who attended the centers during the implementation period were reached through the screening. Around half of the screened patients were identified as being at high risk of developing T2D (FINDRISC score ?14). The rate of refusal to participate and the proportion of women were higher in the intervention group. Finally, 634 and 454 non-diabetic 45- to 70-year-old patients who were at high risk of T2D were included in the control and intervention group centers (intervention reach?=?48 %). Significant variability in most process indicators was observed at center level.The passive dissemination strategy has produced modest process indicators related to the adoption, reach and implementation of the intervention program, and reduced the possibility of its standardized application in heterogeneous contexts. The resulting different procedures and strategies used by the centers were associated with process outcomes. Context-specific variability and possible confounding will require rigorous procedures for analysis of the intervention effects.The trial was registered in ClinicalTrials.gov (identifier: NCT01365013 ). Registered on June 2011.

Dataset Information

An open and transparent process to select ELIXIR Node Services as implemented by ELIXIR-UK.

Publications

An open and transparent process to select ELIXIR Node Services as implemented by ELIXIR-UK.

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