area of using our data for human rights outcomes, there is very little guidance in this
area and a training program specifically addressing this approach was carried out under
this project. (For further information, please contact Leanne MacMillan at lm@irct.org).
There are a number of human rights outcomes we can gain from the appropriate use of
the clinical data we hold and a range of tools we can use from sharing individual stories
as part of a communications push to raise awareness to reports with recommendations
that become the basis for a sustained campaign to create change. For example, data
can be used to provide evidence for an individual survivor to seek justice; we can draw
on trends and patterns we see across clients in our rehabilitation practice to identify and
pursue perpetrators; we can identify places where torture is more likely to occur; we can
identify torture victims targeted due to their identify such as women and children,
political, religious, ethnic and cultural groups. In the past few years emphasis has been
placed on using clinical data for the purposes of holding States to account through
research reports submitted to international treaty bodies and thematic mechanisms with
some success (see the IRCT website for current information on country and thematic
reports at UN and regional mechanisms).
A new challenge for rehabilitation service providers and the sector itself is to gather the
data and evidence to support our demands of States to deliver on their duty to establish
and support torture rehabilitation services according to the requirements of international
law. A three-year long project will be launched in early 2014 that will bring together a
number of partners providing rehabilitation services to build their skills in data collection
and dissemination. Watch the IRCT website for details as that emerges and guidance on
how to do this work.
Using clinical data for human rights outcomes
It is good practice to:
6.
Assess the risks and opportunities of sharing client data or stories
externally in your context and beyond including any risks that might be created
for the individual survivor, the service provider and the rehabilitation center.
Evaluate the ethical implications of using clinical data and develop
appropriate standards and protocols for using this information that is systemwide and includes considerations by all those professional groups within an
holistic rehabilitation service setting (many organizations set up a research
ethics committee).
Develop a policy and practice of informed client consent for the use of
clinical data, protocols for ensuring confidentiality and data protection. Update
the client consent regularly and ensure that it is time bounded.
Develop an understanding and practice of appropriate data collection,
management, research and reporting standards with an emphasis on best
practices, accuracy and impartiality.
Determine what information you hold and how it might best be used such
as for a campaign, for advocacy, lobbying or policy making purposes.
Establish a research strategy or plan of action to ensure that effective use
is made of data held in clinical records and that all efforts are made to limit use
of these records with a view to efficient and effective use.
CARING FOR CAREGIVERS
Caring for yourself in working with torture survivors is one of the most important
considerations you must take, yet it is often one of the most overlooked. This could be
due to a lack of institution support for the well-being of staff, workloads, time
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