Improving data availability for brain image biobanking in healthy subjects: practice-based suggestions from an international multidisciplinary working group

International audienceBrain imaging is now ubiquitous in clinical practice and research. The case for bringing together large amounts of image data from well-characterised healthy subjects and those with a range of common brain diseases across the life course is now compelling. This report follows a meeting of international experts from multiple disciplines, all interested in brain image biobanking. The meeting included neuroimaging experts (clinical and non-clinical), computer scientists, epidemiologists, clinicians, ethicists, and lawyers involved in creating brain image banks. The meeting followed a structured format to discuss current and emerging brain image banks; applications such as atlases; conceptual and statistical problems (e.g. defining 'normality'); legal, ethical and technological issues (e.g. consents, potential for data linkage, data security, harmonisation, data storage and enabling of research data sharing). We summarise the lessons learned from the experiences of a wide range of individual image banks, and provide practical recommendations to enhance creation, use and reuse of neuroimaging data. Our aim is to maximise the benefit of the image data, provided voluntarily by research participants and funded by many organisations, for human health. Our ultimate vision is of a federated network of brain image biobanks accessible for large studies of brain structure and function

Capacity Building for a New Multicenter Network Within the ECHO IDeA States Pediatric Clinical Trials Network

Introduction: Research capacity building is a critical component of professional development for pediatrician scientists, yet this process has been elusive in the literature. The ECHO IDeA States Pediatric Clinical Trials Network (ISPCTN) seeks to implement pediatric trials across medically underserved and rural populations. A key component of achieving this objective is building pediatric research capacity, including enhancement of infrastructure and faculty development. This article presents findings from a site assessment inventory completed during the initial year of the ISPCTN. Methods: An assessment inventory was developed for surveying ISPCTN sites. The inventory captured site-level activities designed to increase clinical trial research capacity for pediatrician scientists and team members. The inventory findings were utilized by the ISPCTN Data Coordinating and Operations Center to construct training modules covering 3 broad domains: Faculty/coordinator development; Infrastructure; Trials/Research concept development. Results: Key lessons learned reveal substantial participation in the training modules, the importance of an inventory to guide the development of trainings, and recognizing local barriers to clinical trials research. Conclusions: Research networks that seek to implement successfully completed trials need to build capacity across and within the sites engaged. Our findings indicate that building research capacity is a multi-faceted endeavor, but likely necessary for sustainability of a unique network addressing high impact pediatric health problems. The ISPCTN emphasis on building and enhancing site capacity, including pediatrician scientists and team members, is critical to successful trial implementation/completion and the production of findings that enhance the lives of children and families

Community Based Participatory Research: The Application and Lessons Learned from a Study with LGB College Students

Lesbian, gay, and bisexual (LGB) individuals are members of a vulnerable group where health disparities have been identified. To gain a better understanding of the LGB college student healthcare experience and its contribution to the healthcare disparities found in LGB population, a community based participatory research (CBPR) approach was used to fill the gap. This paper will outline the CBPR process with an emphasis on how the principle investigator applied the tenets of CBPR when working with a local LGB college community. Several lessons learned from the research process are also shared in this paper

Supporting Youth in Transition to Adulthood: Lessons Learned from Child Welfare and Juvenile Justice

The Georgetown Public Policy Institute's Center for Juvenile Justice Reform and the Jim Casey Youth Opportunities Initiative collaborated to publish this paper that describes case assessment, case management, and other practices implemented in the juvenile justice and child welfare systems. The practices highlighted have shown promise in improving outcomes for the transition-age population

The Medicare Physician Group Practice Demonstration: Lessons Learned on Improving Quality and Efficiency in Health Care

Discusses the experiences of ten large practices earning performance payments for improving the quality and cost-efficiency of health care delivered to Medicare fee-for-service beneficiaries

Identifying common problems in the acquisition and deployment of large-scale software projects in the US and UK healthcare systems

Public and private organizations are investing increasing amounts into the development of healthcare information technology. These applications are perceived to offer numerous benefits. Software systems can improve the exchange of information between healthcare facilities. They support standardised procedures that can help to increase consistency between different service providers. Electronic patient records ensure minimum standards across the trajectory of care when patients move between different specializations. Healthcare information systems also offer economic benefits through efficiency savings; for example by providing the data that helps to identify potential bottlenecks in the provision and administration of care. However, a number of high-profile failures reveal the problems that arise when staff must cope with the loss of these applications. In particular, teams have to retrieve paper based records that often lack the detail on electronic systems. Individuals who have only used electronic information systems face particular problems in learning how to apply paper-based fallbacks. The following pages compare two different failures of Healthcare Information Systems in the UK and North America. The intention is to ensure that future initiatives to extend the integration of electronic patient records will build on the ‘lessons learned’ from previous systems

Evaluation of the Community Child Health Research Network (CCHN) Community-Academic Partnership

Background: The Community Child Health Network (CCHN) is a research collaborative network of five communities in the U.S. formed to study maternal and child health disparities, via a community-based participatory research study design. CCHN studies how community, family, and individual level influences interact with biological processes to affect maternal stress, resilience, and allostatic load; ultimately, the study evaluates whether such factors result in health disparities in pregnancy outcomes and infant and early childhood mortality and morbidity. The purpose of this paper is to assess the community-based participatory research (CBPR) process that governs the CCHN and offer lessons from our experiences. Methods: This study employs a qualitative approach to evaluate the CBPR process among CCHN community and academic partners. Qualitative interviews (n=17) were completed by both community and academic CCHN partners. Results: Content analysis of qualitative data revealed six major themes (1) lack of necessary resources; (2) collaborative learning; (3) perceived benefits; (4) communication and education; (5) trust and expectations; and (6) sustainability. Discussion: The benefits and challenges of implementing productive, community-academic partnerships were present both at the local site-level and the network-level. Ultimately, the inclusion of community-based participatory research principles and methods enhanced the study development, implementation, analysis, and dissemination of findings. Conclusion: Lessons learned from a multi-site CBPR project, including strategies for managing learning and communication across different geographic sites, may be useful to other CBPR and multi-site community-based research endeavors

Potential applications of simulation modelling techniques in healthcare: lessons learned from aerospace and military

The Aerospace and Military areas are to do with complex missions and situations. Modelling and Simulation (M&S) has been applied in many areas of defence ranging from space sciences, satellite engineering to multi-warfare (air warfare, undersea warfare), air & missile defence, acquisition, tactical military trainings & exercises, national security analysis and strategic decision making & planning, etc. The application of simulation modelling techniques in healthcare would improve the provision of healthcare services; however, their application has been much relatively feeble in the healthcare sector as compared to the defence sector. This paper presents results from a systematic literature survey on applications of modelling simulation techniques in the Aerospace & Military. The knowledge gained or lessons learned from the survey were finally used to analyze the potential applications of the simulation modelling techniques to the healthcare sector. Results show that in the defence sector, Distributed Simulation has now become a widely adopted technique. However, System Dynamics (SD) and Discrete Event Simulation (DSE) have also gained relative attention. From this survey it becomes clear that various simulation modelling techniques are useful for specific purposes and have potential applications in the healthcare sector

Lessons From a Health Information Technology Demonstration in New York Nursing Homes

Outlines the New York State Nursing Home Health Information Technology Demonstration Project; variations in organizational aims in adopting HIT, perceived or real effects, and resulting quality improvement efforts; and considerations for replication