Education and social service use patterns of children and youth with neurodevelopmental disorders

Introduction This study uses linked administrative data to identify Albertan children and youth (aged 0 to 25 years) with Autism Spectrum Disorder (ASD), Cerebral Palsy (CP) or Fetal Alcohol Spectrum Disorder (FASD), and to examine their government service use patterns from 2005/06 to 2010/11. Objectives and Approach The analysis looks at whether children with ASD, CP and FASD have similar government service use patterns and how their service use patterns changed over time. Six Government of Alberta ministries’ data were linked (Health, Justice, Education, Advanced Education, Children’s Services and Community and Social Services). Individuals were defined as having ASD, CP or FASD if, at any point during the study period, they had a diagnostic code for one of three conditions (ASD, CP or FASD) from a health service (i.e., physician visits, or emergency room visits, or hospitalizations), or accessed disability support programs for ASD, CP or FASD. Results The results showed different service use patterns for the three conditions: (1) a higher proportion of children with ASD were students with special needs compared to children with FASD and CP; (2) a lower proportion of children with FASD received FSCD services compared to children with ASD and CP; (3) a higher proportion of children with FASD were involved in the Child Intervention system and were Income Support recipients compared to children with ASD and CP. Moreover, the study showed that there was a decrease in accessing services and programming from Persons with Development Disabilities (PDD) for young Albertans with ASD, CP and FASD from 2005/06 to 2010/11. In contrast, the use of another adult disability program that provides only financial assistance, Assured Income for Severely Handicapped, increased over time. Conclusion/Implications The use of population-based linked administrative data allows a comprehensive and comparative study for government service use patterns. The findings have implications for cross-ministry policy and program development, resource allocation, and service coordination and delivery to young Albertans with ASD, CP and FASD

Power of Linked Administrative Data

Introduction Linking administrative data provides valuable information about individuals using government services and can be very useful for policy-makers in improving and developing services and policies. The Child and Youth Data Laboratory (CYDL) links and analyses administrative data from Alberta Government ministries to provide evidence for policy and program development. Objectives and Approach Data from 20 programs of six Government of Alberta ministries (Advanced Education, Education, Health, Children’s Services, Community and Social Services, and Justice and Solicitor General) were linked anonymously. The data spans six years from 2005/06 to 2010/11 and consists of almost 50 million records corresponding to over 2 million unique Albertans aged 0 to 25 years. A data visualization tool called the Program Overlap Matrix summarises the overlap rates among the programs. It is comprised of a matrix of squares, where each cell represents the overlap between two programs. Results The Program Overlap Matrix is publically available at https://visualization.policywise.com/P2matrix/. It consists of overlap rates between programs in any study year (2005/06 to 2010/11), individual years, the first year vs. future years, and the last year vs. previous years which can be used to answer many policy-related questions such as: other service use (e.g., what other services do ESL students use?), over-represented programs (e.g., in what programs are Child Care Subsidy clients over-represented?), resilience (e.g., what is the proportion of Child Intervention clients in post-secondary institutions?), transitions (e.g., what types of services do students with special needs receive as they transition to adulthood?), and time trend (e.g., what types of services did Income Support clients receive in the past?) Conclusion/Implications The program overlap matrix is a powerful tool to discover relationships between programs. It is a useful instrument to inform public and policy-makers about the overlap rates between government programs. It can be used to answer a variety of policy-related questions

Linkage Quality Assessment for Anonymously linked Administrative Data.

Introduction Linked datasets are important resources for research, but linkage errors can lead to incorrect results. For data security and privacy concerns, when linkage of personal identifiers is performed anonymously, it is difficult to assess the quality of the linked dataset. We describe the method used to perform linkage quality. Objectives and Approach We explored how to check the quality of linkages while preserving the privacy of individuals. We also adopted an approach that minimized time and burden on data providers involved in physical verification using randomly-generated appropriate sample sizes. To validate these linkages, data providers were given random samples of 50 unique records from both linked and unlinked individuals across two other Government programs. Data providers were asked to look at the records associated with those individuals in their original datasets. Three types of linkage results were validated: cross-program linkages, cross-program non-linkages, and within-program linkages. Proportions of false-matches and missed-matches were estimated. Results Twenty data providers checked their samples with two other programs which gave us a sample of 2000 individuals. The linkage process, based on anonymized personal identifiers, resulted in high true positive and high true negative rates. Agreement between human judges and the linkage software was strong. Results of this exercise and other linkage validation examinations provided confidence in the accuracy of the linkage process. With false matches occurring approximately only 3% of the time and virtually no missed-matches occurring, no adjustments were deemed necessary. Although linkage rates were reassuring, the sample sizes used for comparison were small, so it is expected that there would be significant variation associated with this 3% estimate; caution is advised in its use. Conclusion/Implications Proportions of false-matches and missed-matches determine linkage quality which is the base for research when linkages are performed anonymously. A low proportion of false-matches and an absence of missed-matches was an indication of robust linkages

Calgary Thrives: Data sharing and linkage in the not-for-profit sector.

Introduction Compared to the public sector, not-for-profits are less focused on cross-agency data linkage. Technical capacity is often secondary to addressing caseloads and protecting clients. Clients’ privacy is paramount and can be perceived as a barrier to collaboration between agencies. However, collaboration could streamline referrals and better assist vulnerable populations. Objectives and Approach Six not-for-profit agencies in Calgary, Canada participated in a data sharing project to measure various aspects of poverty and link data to determine cross-agency service usage. With this goal in mind, agencies examined their consent and data sharing practices to assess barriers to data sharing. There was a thorough exploration of client consent and how a client’s context can enable or limit data sharing. Cross-agency program usage was assessed among participating agencies using a privacy-preserving record linkage (PPRL) methodology. Results Amongst the six participating agencies, four were deemed to have adequate technical capacity to share data. A contributing factor to the willingness of agencies to share data was the development of LinkWise: a PPRL software created and developed by PolicyWise. Linkage rates amongst three agencies were compared. Rates ranged from 47.8% to 0.23%. A higher linkage rate between two agencies indicated a small community based agency which provided many referrals to a larger agency, such as a food bank. Lower linkage rates on client intake may indicate an agency with many clients. It may also indicate differing socio-economic brackets for their clients’ catchment area. Conclusion/Implications While capacity, caseloads, and privacy protection restrict data sharing, not-for-profit agencies would benefit from a data sharing strategy. Linking data represent opportunities for collaboration within a significantly resource constrained sector. Moreover, it could more effectively address issues of vulnerable populations, streamline referrals for services, and facilitate quality improvement

SAGE: supporting secondary data analysis and expediting knowledge mobilization with linked administrative, service delivery, and research data

Introduction The cultural revolution of data sharing is becoming a global movement. It allows for scientific replication and verification of research results, avoiding research duplication, and enabling greater transparency and knowledge mobilization with a relatively low cost. However, privacy protection and data security are critical concerns for human-subject related data sharing. Objectives and Approach In order to facilitate data sharing and engage various stakeholders to better inform policy and practice while protecting privacy, SAGE (Secondary Analysis to Generate Evidence) was established by PolicyWise for Children and Families. It is a collaborative data repository platform that connects stakeholders through secondary use of data. SAGE was built to link, manage, and share research data, community service data, and administrative data related to health and social well-being. Governance and technical processes are in place to ensure that data depositors are involved in decision-making, and data accessed by collaborators are secured and re-identification risks assessed. Results SAGE has been in operation for over a year. Through engagement with the research and non-profit communities, SAGE now offers ten data assets. Discovery is facilitated through well-documented metadata through NADA and Dataverse. Six new collaborative projects have been initiated through SAGE. SAGE is working actively with local non-profits to liberate data to generate evidence and collaborate with each other on common goals. SAGE has helped these organizations understand the legal and legislative barriers to data sharing, and build the technical capacity to further this goal. Discussions are underway with Alberta public entities on how SAGE can support the linkage and governance processes in the use of administrative data. Conclusion/Implications SAGE is putting the governance processes and security practices in place to fill a need for a facilitated data sharing model for sensitive data. SAGE is supporting the cultural shift towards data sharing and reuse by fostering trust and collaboration among researchers, non-profit and government ministries

Molecular Epidemiology of Early and Acute HIV Type 1 Infections in the United States Navy and Marine Corps, 2005–2010

The U.S. military represents a unique population within the human immunodeficiency virus 1 (HIV-1) pandemic. The last comprehensive study of HIV-1 in members of the U.S. Navy and Marine Corps (Sea Services) was completed in 2000, before large-scale combat operations were taking place. Here, we present molecular characterization of HIV-1 from 40 Sea Services personnel who were identified during their seroconversion window and initially classified as HIV-1 negative during screening. Protease/reverse transcriptase (pro/rt) and envelope (env) sequences were obtained from each member of the cohort. Phylogenetic analyses were carried out on these regions to determine relatedness within the cohort and calculate the most recent common ancestor for the related sequences. We identified 39 individuals infected with subtype B and one infected with CRF01_AE. Comparison of the pairwise genetic distance of Sea Service sequences and reference sequences in the env and pro/rt regions showed that five samples were part of molecular clusters, a group of two and a group of three, confirmed by single genome amplification. Real-time molecular monitoring of new HIV-1 acquisitions in the Sea Services may have a role in facilitating public health interventions at sites where related HIV-1 infections are identified

Hepatitis B Seroprevalence in the U.S. Military and its Impact on Potential Screening Strategies

INTRODUCTION: Knowledge of the contemporary epidemiology of hepatitis B virus (HBV) infection among military personnel can inform potential Department of Defense (DoD) screening policy and infection and disease control strategies. MATERIALS AND METHODS: HBV infection status at accession and following deployment was determined by evaluating reposed serum from 10,000 service members recently deployed to combat operations in Iraq and Afghanistan in the period from 2007 to 2010. A cost model was developed from the perspective of the Department of Defense for a program to integrate HBV infection screening of applicants for military service into the existing screening program of screening new accessions for vaccine-preventable infections. RESULTS: The prevalence of chronic HBV infection at accession was 2.3/1,000 (95% CI: 1.4, 3.2); most cases (16/21, 76%) identified after deployment were present at accession. There were 110 military service-related HBV infections identified. Screening accessions who are identified as HBV susceptible with HBV surface antigen followed by HBV surface antigen neutralization for confirmation offered no cost advantage over not screening and resulted in a net annual increase in cost of $5.78 million. However, screening would exclude as many as 514 HBV cases each year from accession. CONCLUSIONS: Screening for HBV infection at service entry would potentially reduce chronic HBV infection in the force, decrease the threat of transfusion-transmitted HBV infection in the battlefield blood supply, and lead to earlier diagnosis and linkage to care; however, applicant screening is not cost saving. Service-related incident infections indicate a durable threat, the need for improved laboratory-based surveillance tools, and mandate review of immunization policy and practice

TRY plant trait database - enhanced coverage and open access

Plant traits-the morphological, anatomical, physiological, biochemical and phenological characteristics of plants-determine how plants respond to environmental factors, affect other trophic levels, and influence ecosystem properties and their benefits and detriments to people. Plant trait data thus represent the basis for a vast area of research spanning from evolutionary biology, community and functional ecology, to biodiversity conservation, ecosystem and landscape management, restoration, biogeography and earth system modelling. Since its foundation in 2007, the TRY database of plant traits has grown continuously. It now provides unprecedented data coverage under an open access data policy and is the main plant trait database used by the research community worldwide. Increasingly, the TRY database also supports new frontiers of trait-based plant research, including the identification of data gaps and the subsequent mobilization or measurement of new data. To support this development, in this article we evaluate the extent of the trait data compiled in TRY and analyse emerging patterns of data coverage and representativeness. Best species coverage is achieved for categorical traits-almost complete coverage for 'plant growth form'. However, most traits relevant for ecology and vegetation modelling are characterized by continuous intraspecific variation and trait-environmental relationships. These traits have to be measured on individual plants in their respective environment. Despite unprecedented data coverage, we observe a humbling lack of completeness and representativeness of these continuous traits in many aspects. We, therefore, conclude that reducing data gaps and biases in the TRY database remains a key challenge and requires a coordinated approach to data mobilization and trait measurements. This can only be achieved in collaboration with other initiatives

The number of tree species on Earth

One of the most fundamental questions in ecology is how many species inhabit the Earth. However, due to massive logistical and financial challenges and taxonomic difficulties connected to the species concept definition, the global numbers of species, including those of important and well-studied life forms such as trees, still remain largely unknown. Here, based on global groundsourced data, we estimate the total tree species richness at global, continental, and biome levels. Our results indicate that there are 73,000 tree species globally, among which ∼9,000 tree species are yet to be discovered. Roughly 40% of undiscovered tree species are in South America. Moreover, almost one-third of all tree species to be discovered may be rare, with very low populations and limited spatial distribution (likely in remote tropical lowlands and mountains). These findings highlight the vulnerability of global forest biodiversity to anthropogenic changes in land use and climate, which disproportionately threaten rare species and thus, global tree richness

The number of tree species on Earth.

One of the most fundamental questions in ecology is how many species inhabit the Earth. However, due to massive logistical and financial challenges and taxonomic difficulties connected to the species concept definition, the global numbers of species, including those of important and well-studied life forms such as trees, still remain largely unknown. Here, based on global ground-sourced data, we estimate the total tree species richness at global, continental, and biome levels. Our results indicate that there are ∼73,000 tree species globally, among which ∼9,000 tree species are yet to be discovered. Roughly 40% of undiscovered tree species are in South America. Moreover, almost one-third of all tree species to be discovered may be rare, with very low populations and limited spatial distribution (likely in remote tropical lowlands and mountains). These findings highlight the vulnerability of global forest biodiversity to anthropogenic changes in land use and climate, which disproportionately threaten rare species and thus, global tree richness