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There is increasing potential to improve the research and reporting on the health and wellbeing of Indigenous and Tribal peoples through the collection and (re)use of population-level data. As the data economy grows and the value of data increases, the optimization of data pertaining to Indigenous peoples requires governance that defines who makes decisions on behalf of whom and how these data can and should be used. An international a priori PROSPERO (#CRD42020170033) systematic review was undertaken to examine the health research literature to (1) identify, describe, and synthesize definitions and principles; (2) identify and describe data governance frameworks; and (3) identify, describe, and synthesize processes, policies and practices used in Indigenous Data Governance (ID-GOV). Sixty-eight articles were included in the review that found five components that require consideration in the governance of health research data pertaining to Indigenous people. This included (1) Indigenous governance; (2) institutional ethics; (3) socio-political dynamics; (4) data management and data stewardship; and (5) overarching influences. This review provides the first systematic international review of ID-GOV that could potentially be used in a range of governance strategies moving forward in health research.
Machine learning-based risk prediction models may outperform traditional statistical models in large datasets with many variables, by identifying both novel predictors and the complex interactions between them. This study compared deep learning extensions of survival analysis models with Cox proportional hazards models for predicting cardiovascular disease (CVD) risk in national health administrative datasets.
The narrative free-text data in electronic medical records (EMRs) contain valuable clinical information for analysis and research to inform better patient care. However, the release of free text for secondary use is hindered by concerns surrounding personally identifiable information (PII), as protecting individuals' privacy is paramount. Therefore, it is necessary to deidentify free text to remove PII. Manual deidentification is a time-consuming and labor-intensive process. Numerous automated deidentification approaches and systems have been attempted to overcome this challenge over the past decade.
Current efforts to reduce dementia focus on prevention and risk reduction by targeting modifiable risk factors. As dementia and cardiometabolic non-communicable diseases (NCDs) share risk factors, a single risk-estimating tool for dementia and multiple NCDs could be cost-effective and facilitate concurrent assessments as compared with a conventional single approach. The aim of this study is to develop and validate a new risk tool that estimates an individual's risk of developing dementia and other NCDs including diabetes mellitus, stroke and myocardial infarction. Once validated, it could be used by the public and general practitioners.
Estimating multimorbidity (presence of two or more chronic conditions) using administrative data is becoming increasingly common. We investigated (1) the concordance of identification of chronic conditions and multimorbidity using self-report survey and administrative datasets; (2) characteristics of people with multimorbidity ascertained using different data sources; and (3) whether the same individuals are classified as multimorbid using different data sources.
At present, we have very limited ability to compare public health activity across jurisdictions and countries, or even to ascertain differences in what is considered to be a public health activity. Existing standardised health classifications do not capture important dimensions of public health, which include its functions, the methods and interventions used to achieve these, the health issues and determinants of health that public health activities address, the resources and infrastructure they use, and the settings in which they occur. A classification that describes these dimensions will promote consistency in collecting and reporting information about public health programs, expenditure, workforce and performance. This paper describes the development of an initial version of such a classification.
This paper describes the trial of a novel intervention, Supporting Policy In health with evidence from Research: an Intervention Trial (SPIRIT). It examines (1) the feasibility of delivering this kind of programme in practice; (2) its acceptability to participants; (3) the impact of the programme on the capacity of policy agencies to engage with research; and (4) the engagement with and use of research by policy agencies.
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