Bookmarks
Some helpful tools to support community engagementThis tool box is focussed on HIV research, however some of the material could be adapted for other disease areas and these do provide good examples. Others views would be welcome - and other similar examples, perhaps for other disease areas?
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Bookmarked by The Editorial Team on 13 Jul 2010
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WHO informed consent templatesPlease note that these are templates developed by the WHO ERC to assist the Principal Investigator in the design of their informed consent forms (ICF). It is important that Principal Investigators adapt their own ICFs to the outline and requirements of their particular study. The logo of the Institution must be used on the ICF and not the WHO logo.
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Bookmarked by The Editorial Team on 13 Jul 2010
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Strengthening the Informed Consent Process in International Health Research...Link to online article about improving the informed consent through Community Engagement: The KEMRI-Wellcome Trust Research Programme Experience.
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Bookmarked by The Editorial Team on 9 Nov 2011
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Blog posts
My experience with consenting patients and parents
This blog is closed to new posts due to inactivity. The post remains here as part of the network’s archive ...
A rapid review of community engagement and informed consent processes for adaptive platform trials and alternative design trials for public health emergencies
by Alun Davies et al.Descendants of Conscientious Objectors Sharing Their Stories
by Tolich, MartinArchibald Baxter is the best known conscientious objector and his story is well documented in his biography We will not Cease. However, many other men in the First and Second World War took a pacifist stance and them and their families were persecuted for it.
Promising practices in the engagement of people living with or at risk for HIV/AIDS in rural Canada [Updated]
by Paterson, BarbaraThe research is a community-based research (CBR) study intended to (1) contribute to the understanding of how the “Greater Involvement of Persons Living with HIV/AIDS” (GIPA) principle is operationalized in rural regions, and (2) to provide direction to AIDS Service Organizations (ASOs), policymakers and people living with HIV/AIDS (PHAs) or at-risk for HIV about how the ideals of GIPA could be fully realized within ASOs in rural regions of Canada, specifically in the rural regions of the Maritime provinces (Nova Scotia [NS], New Brunswick [NB], and Prince Edward Island [PEI]).
Images & Voices: An Arts-Based Qualitative Study Using Photovoice to Understand the Needs & Aspirations of Sex Workers in Portland, Oregon
by Desyllas, Moshoula CapousThe ways in which sex workers have been studied and represented historically, socio-politically and academically do not take into account their voices and participation in the process. Arts-based research provides the potential for collaboratively developing unique knowledge and insight about the experiences of sex workers and the meanings assigned to those experiences.
Vulnerability and Exclusion from Research
by Mark P. SheehanMany of the scandals that surround modern medicine involve research conducted on human subjects. Consequently when discussion turns to the ethics of research, such atrocities as the Nazi hypothermia experiments at Dachau conentration camp during World War Two (Berger 1990) or the Tuskegee Syphilis Study in Alabama beginning in the 1930s (Pence 2000) are never far from the surface...The reaction to these atrocities has, justifiably, been extreme. In this paper, Sheehan considers the consequences of these reactions - the exclusion of particular groups from participation in research.
The informed consent process is fundamental to ensuring that clinical trials are conducted ethically. This article outlines some issues to consider.