Harry Shepherd recently completed a Hilton Prize Coalition Fellowship with the IRCT (The International Rehabilitation Council for Torture Victims). The IRCT serves as an umbrella organization for over 150 member centers that aid survivors of torture in more than 70 countries. Originally from the UK, Harry brought two years’ experience in the technology sector, working at the IRCT while completing his Master’s of Science in Global Development at The University of Copenhagen. In this post, Harry reflects on the challenges, lessons and results of working with 33 torture rehabilitation centers to build a clinical database as part of the IRCT’s Data in the Fight against Impunity (DFI) project.
Fighting Torture with Data: The Challenges and Consequences of International Collaboration
by Harry Shepherd
The IRCT’s Data in the Fight against Impunity (DIF) project involved 33 torture rehabilitation centres from 28 different countries working across many time zones. Arriving partway into this project and being tasked with assisting the design and delivery of a database technology innovation that captures clinical data on victims of torture was daunting. It soon became clear, however, that the work to leverage patients’ data more systematically so that it could be used to fight against impunity for these victims of torture, would form a strong motivating force.
The methodology of the DFI project was one of continual collaboration across the Secretariat team and between the members. This was critical in yielding the IRCT member centres’ shared expertise in order to design the clinical database. The database systematically records data about the victims of torture: their characteristics; how they were tortured; the context in which they were tortured; the presenting symptoms; and recommended rehabilitation treatments.
Of course the heterogeneity of the centres regarding size, location, breadth of rehabilitation services provided, types of victims treated, and respective resource limitations meant that achieving a consensus on how this should be designed was demanding. However, it is this same diversity across the IRCT’s global membership that makes the IRCT unique. The centres remained determined to leverage their breadth of insights to strengthen the overall impact of DFI.
Regional workshops, video conferencing, the IRCT membership site, and weekly project newsletters were among the devices used to yield the - internationally located- voices of the centres. Both operational and more academic challenges were overcome through these means. Everything, from how the informed consent form ought to be uploaded to the database, to how terms such as “secondary victims (of torture)” should be understood, were discussed. This consensus enabled the team in Copenhagen to manage an external IT consultant to create a database technology that captures the various data fields needed. And then, before the database could be implemented at the member centres, it required translation into the five languages used by the corresponding members. A number of upgrades were completed to evolve the database into a slick, useful, and secure tool based on centres’ feedback.
I feel privileged to have helped coordinate this. Now that the project is over, at least under its current project cycle, I have learnt that close communication with centres and the development of a strong sense of community among them is the key to a successful project like DFI. This can of course be a significant challenge when working across countries, let alone continents; however, the use of technology platforms, underpinned by a strong culture of open dialogue, can enhance a project’s success.
As with all projects of this scale, trial and error allows the organisation to understand what works well and what does not. Compromises were, of course, made at times as local needs differ, project deadlines continually loom, and resources remain finite. Overall I feel extremely proud to be a part of a strategy that has enabled 33 centres to agree the contents, scope and design of a clinical database that is now being used to improve centres’ operational efficiency and human rights outputs. Thanks to this project, IRCT’s mission to ensure more patients can be seen, to support advocacy initiatives, and to contribute to the global fight against torture and the rehabilitation of victims is being realised.
I would like to say a massive thank you for the Hilton Prize Coalition for awarding me the Fellowship and allowing me to take up this opportunity at the IRCT.
(Photos courtesy of the author)