scholarly journals Ethics of Involving Children in Health-Related Research: Applying a Decision-Making Framework to a Clinical Trial

2010 ◽  
Vol 62 (4) ◽  
pp. 338-346 ◽  
Author(s):  
Barbara Kelly ◽  
Marilyn J. MacKay-Lyons
2019 ◽  
Vol 5 (1) ◽  
Author(s):  
Willemijn M. den Oudendammer ◽  
Jacquelien Noordhoek ◽  
Rebecca Y. Abma-Schouten ◽  
Lieke van Houtum ◽  
Jacqueline E. W. Broerse ◽  
...  

Abstract Background Patient participation in decision-making on health-related research has gained ground. Nineteen Dutch health-related research-funding organisations (HFs) have taken up the challenge to include patients in their funding process. A ‘Patient participation (PP) advisory team’ was set-up, with HF-representatives and patient advocates, who together initiated this study. We provide an overview of when, why, and how PP activities take place in HFs’ funding processes, share main challenges and identify possible solutions. Methods A qualitative research design was used. Data was gathered by questionnaires (n = 14) and semi-structured interviews (n = 18) with HF employees responsible for patient participation, followed by a workshop (n = 27) with involved employees of HFs and key players in PP from national patient organisations and research organisations. A descriptive analysis was used for the questionnaire. A semi-directed content analysis was used for the interviews and the workshop. Results Three stages can be identified in the funding process in which HFs carry out PP activities: (1) strategic decision-making about focus of research (e.g. shared research agendas); (2) call for and receipt of research proposals (e.g. mandatory inclusion of letter of recommendation from patient organisation); (3) decision-making about the funding of research proposals (e.g. patients reside in a patient panel to co-review research proposals). Main challenges identified to carry out PP activities include: how to accommodate diversity of the patient body (mainly encountered in stage 1 and 3); to what extent should patients receive training to successfully participate (mainly encountered in stage 1 and 3); and who is responsible for patient-researcher dialogues (mainly encountered in stage 1 and 2). All nineteen HFs agree that patients should be included in at least one stage of the funding process for health-related research. CONCLUSION: Further broadening and optimising patient involvement is still needed. The proposed solutions to the identified challenges could serve as inspiration for national and international research funding foundations that aim to structurally include patients in their funding process.


2017 ◽  
Vol 27 (7) ◽  
pp. 790-799 ◽  
Author(s):  
Yulia A. Strekalova

Significant barriers to participant recruitment for clinical research (CR) are related to effective communication, and nurse coordinators are entrusted with being knowledge brokers between investigators and prospective participants. This prospective cohort study sought to identify linguistic choices that could inform and facilitate recruitment efforts. Healthy adults ( N = 204) were invited to join an online survey to assess the likelihood of participation in CR based on short and extended definitions of CR. Five short definitions included clinical trial, clinical study, health-related research study, community participatory study, and quality improvement study. The likelihood of participation in CR was the lowest for clinical trial and the highest for health-related research study. However, when only an extended definition was provided, those differences were not observed. A linguistic change from trial to study could lead to positive attitude toward CR and improvements in recruitment. However, ethical implications of linguistic choices should be considered.


Crystals ◽  
2019 ◽  
Vol 9 (10) ◽  
pp. 544
Author(s):  
Lindsay J. Shearer ◽  
Nils O. Petersen

Gold nanoparticles are used in health-related research; however, their effectiveness appears to depend on how well they are internalized and where they are destined to travel. Internalization in cells is efficient if the gold nanoparticles are biocompatible, where one possible pathway of cell entry and processing is clathrin-mediated endocytosis. In this work we studied the co-localization of phospholipid-coated gold nanoparticles (PCAuNPs) with markers of the endocytic pathway (Rab and LAMP-1 proteins) in C2C12 and A549 cells and found that the internalization was consistent with clathrin-mediated endocytosis and was cell type dependent. We further found that the time evolution of uptake and disposal of these PCAuNPs was similar for both cell types, but aggregation was more significant in A549 cells. Our results support the use of these PCAuNPs as models for potential drug delivery platforms.


2021 ◽  
pp. 1-15
Author(s):  
Jodi Schneider ◽  
Michele Avissar-Whiting ◽  
Caitlin Bakker ◽  
Hannah Heckner ◽  
Sylvain Massip ◽  
...  

Open science and preprints have invited a larger audience of readers, especially during the pandemic. Consequently, communicating the limitations and uncertainties of research to a broader public has become important over the entire information lifecycle. This paper brings together reports from the NISO Plus 2021 conference session “Misinformation and truth: from fake news to retractions to preprints”. We discuss the validation and verification of scientific information at the preprint stage in order to support sound and open science standards, at the publication stage in order to limit the spread of retracted research, and after publication, to fight fake news about health-related research by mining open access content.


BMJ Open ◽  
2019 ◽  
Vol 9 (8) ◽  
pp. e028714
Author(s):  
Ronny Gunnarsson ◽  
Paul Cullen ◽  
Clare Heal ◽  
Jennifer Banks

ObjectiveThe objectives of this study were threefold: to estimate people’s interest in health-related research, to understand to what extent people appreciate being actively informed about current local health-related research and to investigate whether their interest can be influenced by advertising local current health-related research using large TV monitors.DesignRandomised controlled trial using a stepped wedge design.SettingThe emergency department waiting room at two public hospitals in northern Queensland, Australia.ParticipantsWaiting patients and their accompanying friends and relatives in the emergency department waiting room not requiring immediate medical attention.InterventionsA TV monitor advertising local current health-related research.Main outcome measuresOR for the effect of intervention on changing the interest in health-related research compared with a control group while adjusting for gender, age and socioeconomic standard.ResultsThe intervention significantly increased the short-term interest in health-related research with an OR of 1.3 (1.1–1.7, p=0.0063). We also noted that being female and being older was correlated to a higher interest in health-related researchConclusionsThis study found that proactive information significantly increased the general populations’ interest in health-related research. There are reasonable set up costs involved but the costs for maintaining the system were very low. Hence, it seems reasonable that research-active organisations should give much higher priority to this type of activity.Trial registration numberACTRN12617001085369


2012 ◽  
Vol 58 (2) ◽  
pp. 169-176 ◽  
Author(s):  
LiGang Hu ◽  
Bin He ◽  
YuChuan Wang ◽  
GuiBin Jiang ◽  
HongZhe Sun

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