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Challenges of sharing individual participant data for secondary research on neglected tropical diseases: the experience of Drugs for Neglected Diseases initiative and a call for action.
BMJ Open
December 2024
Drugs for Neglected Diseases initiative, Geneva, Switzerland
Introduction: The Drugs for Neglected Diseases initiative (DNDi) is committed to maximising the scientific value of the individual participant data (IPD) it has collected during its 20 years of activity and the IPD it will collect in the future, while safeguarding research participants' privacy and their right to know how their data will be processed.
Objective: The objective of this article is to share what DNDi has learnt while working on its commitment to data sharing. It also aims to advance the debate about best practice in the research community to avoid 'IPD sharing paralysis', with a focus on multistakeholder projects involving patients and researchers based in countries with various levels of data privacy regulations and measures.
Applying Normalisation Process Theory to a peer-delivered complex health intervention for people experiencing homelessness and problem substance use.
Commun Med (Lond)
January 2025
Salvation Army Centre for Addiction Services and Research, Faculty of Social Sciences, Colin Bell Building, University of Stirling, Stirling, Scotland, UK.
Background: The Supporting Harm Reduction through Peer Support (SHARPS) study involved designing and implementing a peer-delivered, harm reduction intervention for people experiencing homelessness and problem substance use. Normalisation Process Theory (NPT) provided a framework for the study.
Methods: Four Peer Navigators (individuals with personal experience of problem substance use and/or homelessness) were recruited and hosted in six third sector (not-for-profit) homelessness services in Scotland and England (United Kingdom).
Patient and public involvement in neonatal research - experiences and insights from parents and researchers.
Res Involv Engagem
January 2025
Department of Public Health, Faculty of Health, Aarhus University, Aarhus, Denmark.
Background: Involving parents in decisions about the care of their infant is common practice in most neonatal intensive care units. However, involvement is less common in neonatal research and a gap appears to exist in understanding the process of patient and public involvement. The aim of this study was to explore parents and researchers' experiences of patient and public involvement in a neonatal research project.
View Article and Find Full Text PDFA scoping review of the electronic collection and capture of patient reported outcome measures for children and young people in the hospital setting.
PLOS Digit Health
January 2025
UCL Great Ormond Street Institute of Child Health, London, United Kingdom.
Patient reported outcome measures (PROMs) capture patients' views of their health status and the use of PROMs as part of standard care of children and young people has the potential to improve communication between patients/carers and clinicians and the quality of care. Electronic systems for the collection of or access to PROMs and integrating PROMs into electronic health records facilitates their implementation in routine care and could help maximise their value. Yet little is known about the technical aspects of implementation including the electronic systems available for collection and capture and how this may influence the value of PROMs in routine care which this scoping review aims to explore.
View Article and Find Full Text PDFGuidance for Introducing the Tobacco-Free Generation Policy.
Int J Health Plann Manage
January 2025
SMRI, The University of Sydney, Sydney, Australia.
This article serves as a guide to the Tobacco-Free Generation policy (TFG) for policy-makers, drawing on experiences of negotiations regarding TFG in a wide number of jurisdictions. It explains the underlying concept: the highly addictive nature of nicotine prompts policy focus on preventing initial use by forbidding sales to those born after a prescribed cut-off birthdate, while resisting prohibition for those in older cohorts who may already be nicotine-dependent. The policy signals that there is no safe age for tobacco products.
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