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Some helpful tools to support community engagement

This 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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WHO informed consent templates

Please 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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consent (1) informed (1)

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.
Samson Muchina Kinyanjui and colleagues from the KEMRI-Wellcome Trust Research Programme discuss how they modified their informed consent processes by taking into account local social, cultural, and economic contexts in the design and administration of consent forms.

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Blog posts

jacobK

Difficulty of obtaining truly informed consent

By jacobK

I work in a developing country setting, and realise that the communities we work with have little education, often live ...

Promero

My experience with consenting patients and parents

By Promero

Hello everyone. I work in clinical trials in urban slums around Rio in Brazil. We work mainly on infectious diseases ...


Archibald 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.

1st November 2015 • comment

The 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]).

9th November 2012 • comment

The 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. 

26th March 2012 • comment

Many 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.

21st June 2011 • comment

The informed consent process is fundamental to ensuring that clinical trials are conducted ethically. This article outlines some issues to consider.

21st November 2009 • comment