In Canada, every individual has a right to their personal health information (PHI). As the use of consumer digital health solutions expands across Canada it is evident that a better understanding of the application of this right to individuals under the age of majority is needed. Research was undertaken between December 2015 and March 2016 which focused on various aspects of adolescent electronic access to PHI. The study included a privacy legal framework review; an environmental scan and literature review; a pan-Canadian survey and focus groups.
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PLoS One
January 2025
Nivel, Netherlands Institute for Health Services Research, Utrecht, The Netherlands.
Background: Some of those infected with SARS-CoV-2 suffer from post-COVID syndrome (PCS). However, an uniform definition of PCS is lacking, causing uncertainty about the prevalence and nature of this syndrome. We aimed to improve understanding of PCS by operationalizing different classifications and to explore clinical subtypes.
View Article and Find Full Text PDFJAMA Netw Open
January 2025
Department of Epidemiology and Population Health, Stanford University School of Medicine, Stanford, California.
Importance: Limited research explores mental health disparities between individuals in sexual and gender minority (SGM) populations and cisgender heterosexual (non-SGM) populations using national-level data.
Objective: To explore mental health disparities between SGM and non-SGM populations across sexual orientation, sex assigned at birth, and gender identity within the All of Us Research Program.
Design, Setting, And Participants: This cross-sectional study used survey data and linked electronic health records of eligible All of Us Research Program participants from May 31, 2017, to June 30, 2022.
Paediatr Perinat Epidemiol
January 2025
Department of Paediatrics and Adolescent Medicine, Lillebaelt Hospital, University Hospital of Southern Denmark, Kolding, Denmark.
Background: Although accessing administrative data in healthcare databases may be a more time-efficient and cost-effective method of conducting surveillance, there is evidence suggesting that administrative data alone are not sufficient for population-based surveillance of congenital anomalies.
Objective: To propose recommendations to maximise the potential use of healthcare databases for surveillance of congenital anomalies based on our data linkage experiences and results from the EUROlinkCAT study.
Methods: EUROlinkCAT is a population-based cohort study of 99,416 children with anomalies born between 1995 and 2014.
Orphanet J Rare Dis
January 2025
Department of Pediatrics, Guangdong Provincial People's Hospital, The Second School of Clinical Medicine, Guangdong Academy of Medical Sciences, Southern Medical University, Guangzhou, 510080, China.
Background: Hepatic glycogen storage diseases (GSD) are inborn errors of metabolism with abnormal storage or utilization of glycogen, a complex disease with significant genetic heterogeneity and similar clinical manifestations. This study aimed to describe the gastrointestinal symptoms and endoscopic features of hepatic GSD, including types Ia, Ib, III, VI, and IX, to provide evidence for etiology and treatment.
Methods: A national cohort survey questionnaire was distributed to patients diagnosed with GSD type Ia, Ib, III, VI, and IX through genetic testing or their parents in mainland China in May 2022.
Sci Rep
January 2025
Department of Emergency Medicine, Seoul St. Mary's Hospital, College of Medicine, The Catholic University of Korea, Seoul, Korea.
This study developed a predictive model using deep learning (DL) and natural language processing (NLP) to identify emergency cases in pediatric emergency departments. It analyzed 87,759 pediatric cases from a South Korean tertiary hospital (2012-2021) using electronic medical records. Various NLP models, including four machine learning (ML) models with Term Frequency-Inverse Document Frequency (TF-IDF) and two DL models based on the KM-BERT framework, were trained to differentiate emergency cases using clinician transcripts.
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