Supporting Remote Survey Data Analysis by Co-researchers with Learning Disabilities through Inclusive and Creative Practices and Data Science Approaches.
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ABSTRACT:
SUBMITTER: Chapko D
PROVIDER: S-EPMC7611679 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:IntroductionRecent advancements in big data analytics and the formation of large-scale clinical data repositories provide a unique opportunity to determine the current state of pediatric hearing health care for children who have developmental disabilities. Before answering unresolved questions about diagnostic practice, it is paramount to determine a standard and reliable method for identifying children who have reduced hearing because clinical management is affected by hearing status. The purpose of this study was to compare 5 different methods for identifying cases of reduced hearing from pure-tone thresholds based on developmental disability status.MethodsUsing retrospective clinical data from 100,960 children (0-18 years), hearing status was determined for a total of 226,580 encounters from three clinical sites. 9% of the children had a diagnosis of intellectual disability, autism spectrum disorder, Down syndrome, or cerebral palsy.ResultsResults revealed that encounters from children who have developmental disabilities were more likely to have insufficient data to allow hearing status to be determined. Moreover, methods with higher data demands (i.e., number of thresholds and ear-specific thresholds) resulted in fewer classifiable encounters. The average child age when hearing status was classified for the first time was older for children who have developmental disabilities than for children in the comparison group. Allowing thresholds to build up over multiple test sessions did result in more children who have developmental disabilities being classified than for single-encounter methods, but a meaningful decrease in child age at the time of classification was not seen for this strategy. Compared to the comparison group, children who have developmental disabilities were more likely to have reduced hearing that was stable over time, yet their hearing status was determined at older ages.DiscussionResults provide key guidance to researchers for how to determine hearing status in children for big data applications using electronic health records. Furthermore, several assessment disparities are spotlighted for children who have developmental disabilities that warrant further investigation.
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Project description:Purpose:The main focus of this study is to assess the knowledge and practices of healthcare practitioners regarding data sharing, security, and confidentiality, with a focus on the use of health data retrieved from electronic health records (EHRs) for research purposes. Methods:A descriptive, cross-sectional, questionnaire-based survey study was conducted across all academic institutions including all researchers in the medical field in Jordan. Personal and administrative practices in data sharing were assessed through collecting data from respondents. Results:The response rate was 22% with an average of 10.25 years of experience in publications. Almost 60% had published at least 1 to 3 studies using EHRs. The prevalence of researchers who "Always" used antivirus software and preserved patient's information was 75.5% and 92.2%, respectively. However, other personal security and confidentiality measures were not satisfactory. Less than half of health data used in the research was "Always" anonymised or encrypted and only around 44.0% had "Always" used sensitive data with more specificity than normal data. Conclusion:Confidentiality and data sharing practices of healthcare practitioners and researchers were generally less than optimal. Efforts from healthcare providers, health institutions, and lawmakers should be put in place to protect the security and confidentiality of electronic patient data.
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Project description:BackgroundPatient-reported outcome measures (PROMs) are increasingly used in health care to evaluate service quality and client progress. Response scales are a critical component of PROM content validity and must be designed to be relevant and comprehensible by users.MethodsIn collaboration with eight youth co-researchers with intellectual/developmental disabilities ages 14-21, we used an iterative, three-stage approach to develop and select a response scale for the PEDI-PRO. Stages: 1) inclusive development of response scale options; 2) Collecting data about response scale options during focus groups with youth with intellectual/ developmental disabilities (n = 62); and 3) Analysing data to refine response options.ResultsThrough two cycles of the three-stage process, the inclusive research approach led to the development of a content valid response scale that describes functional performance of everyday activities ("very easy," "a little easy," "a little hard").ConclusionAn inclusive research approach can support the development of content valid PROM scales. We identified four broad strategies that supported youth co-researchers to engage in this response scale development process: universal design for learning, use of lived experiences, breaking down tasks, and peer support. Researchers may adopt and/or adapt the accessible inclusive research approaches described in this manuscript for measurement development and other research projects.
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Project description:IntroductionIn clinical and translational research, data science is often and fortuitously integrated with data collection. This contrasts to the typical position of data scientists in other settings, where they are isolated from data collectors. Because of this, effective use of data science techniques to resolve translational questions requires innovation in the organization and management of these data.MethodsWe propose an operational framework that respects this important difference in how research teams are organized. To maximize the accuracy and speed of the clinical and translational data science enterprise under this framework, we define a set of eight best practices for data management.ResultsIn our own work at the University of Rochester, we have strived to utilize these practices in a customized version of the open source LabKey platform for integrated data management and collaboration. We have applied this platform to cohorts that longitudinally track multidomain data from over 3000 subjects.ConclusionsWe argue that this has made analytical datasets more readily available and lowered the bar to interdisciplinary collaboration, enabling a team-based data science that is unique to the clinical and translational setting.
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Project description:BackgroundBetter research data management (RDM) provides the means to analyze data in new ways, effectively build on another researcher's results, and reproduce the results of an experiment. Librarians are recognized by many as a potential resource for assisting researchers in this area, however this potential has not been fully realized in the biomedical research community. While librarians possess the broad skill set needed to support RDM, they often lack specific knowledge and time to develop an appropriate curriculum for their research community. The goal of this project was to develop and pilot educational modules for librarians to learn RDM and a curriculum for them to subsequently use to train their own research communities.Materials and methodsWe created online modules for librarians that address RDM best practices, resources and regulations, as well as the culture and practice of biomedical research. Data was collected from librarians through questions embedded in the online modules on their self-reported changes in understanding of and comfort level with RDM using a retrospective pre-post design. We also developed a Teaching Toolkit which consists of slides, a script, and an evaluation form for librarians to use to teach an introductory RDM class to researchers at their own institutions. Researchers' satisfaction with the class and intent to use the material they had learned was collected. Actual changes in RDM practices by researchers who attended was assessed with a follow-up survey administered seven months after the class.Results and discussionThe online curriculum increased librarians' self-reported understanding of and comfort level with RDM. The Teaching Toolkit, when employed by librarians to teach researchers in person, resulted in improved RDM practices. This two-tiered curriculum provides concise training and a ready-made curriculum that allows working librarians to quickly gain an understanding of RDM, and translate this knowledge to researchers through training at their own institutions.
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Project description:Open science (OS) is of paramount importance for the improvement of science worldwide and across research fields. Recent years have witnessed a transition toward open and transparent scientific practices, but there is still a long way to go. Early career researchers (ECRs) are of crucial relevance in the process of steering toward the standardization of OS practices, as they will become the future decision makers of the institutional change that necessarily accompanies this transition. Thus, it is imperative to gain insight into where ECRs stand on OS practices. Under this premise, the Open Science group of the Max Planck PhDnet designed and conducted an online survey to assess the stance toward OS practices of doctoral candidates from the Max Planck Society. As one of the leading scientific institutions for basic research worldwide, the Max Planck Society provides a considerable population of researchers from multiple scientific fields, englobed into three sections: biomedical sciences, chemistry, physics and technology, and human and social sciences. From an approximate total population of 5,100 doctoral candidates affiliated with the Max Planck Society, the survey collected responses from 568 doctoral candidates. The survey assessed self-reported knowledge, attitudes, and implementation of different OS practices, namely, open access publications, open data, preregistrations, registered reports, and replication studies. ECRs seemed to hold a generally positive view toward these different practices and to be interested in learning more about them. Furthermore, we found that ECRs' knowledge and positive attitudes predicted the extent to which they implemented these OS practices, although levels of implementation were rather low in the past. We observed differences and similarities between scientific sections. We discuss these differences in terms of need and feasibility to apply these OS practices in specific scientific fields, but additionally in relation to the incentive systems that shape scientific communities. Lastly, we discuss the implications that these results can have for the training and career advancement of ECRs, and ultimately, for the consolidation of OS practices.
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