Abstract
Introduction
The aims of MSF’s Expert-by-Experience (EBE) project were to improve validity, transparency and accountability in MSF's advocacy through inclusion of the expertise of those we seek to represent; to challenge existing narratives that frame and justify the treatment of refugees; and to develop a model of rehabilitation by offering MSF beneficiaries ways of regaining control and dignity.
Methods
Following the development of a referral pathway, clinicians in MSF’s Victims of Torture rehabilitation clinic in Athens used selective criteria, team discussion and one-to-one assessments to recommend beneficiaries and invite them to participate in the project. Weekly open-space sessions, to equip participants with the necessary skills and confidence to speak-out on their own terms, and with impact, co-facilitated by the Advocacy Manager and Cultural Mediators took place over a three month period. Experts received regular supervision and feedback; support and guidance on advocacy actions; and access to decision-makers, within MSF and externally. Project indicators, originally focusing on group development and advancement of the group’s advocacy objectives, were later adjusted to acknowledge the impact of a short project time frame on ambitious advocacy goals, and in response to increased interest from clinicians in the documented rehabilitative impact of activities. Analysis of rehabilitative effects took place through session-by-session monitoring reports and qualitative feedback from beneficiaries and clinicians. This evidence has been compiled in the form of evaluation interviews – individual and group – conducted at the end of each round of training.
Ethics
This description/evaluation of an innovation project involved human participants or their data, and was conducted with permission from Sebastian Spencer, Medical Director, Operational Centre Brussels, MSF.
Results
In terms of advocacy goals, the “Survivors2 Advocacy Group”, as the participants have named themselves, have been successful in speaking out for the rights and recognition of survivors of torture in Greece, writing and publishing articles, briefing organisations, stakeholders, researchers and lawyers, and leading on the design and implementation of a report on the impact of living conditions on survivors. In relation to rehabilitative journeys, beneficiaries and clinicians have reflected on the psychological benefits of a project oriented towards change. Participants described perceived protections against re-traumatisation afforded by speaking directly to desired policy changes, and how a culture of mutual aid and peer support can reduce feelings of social isolation, marginalisation, and powerlessness.
Conclusion
The EBE model offers MSF and other organisations a means to move beyond token engagement of those we seek to represent in our patient-centred advocacy work. However, limitations include the mismatch of long-term advocacy ambitions and the organisation’s focus on emergencies, and the acknowledgement that this work is extremely context specific. The results imply an additional benefit of improved rehabilitation pathways, and baseline data would be necessary to truly measure therapeutic impact. Care should be taken in the collection of such data so as not to undermine the ethos of the project; to recognise participants’ authority – not as a “case-study”, “research respondent”, or “patient” – but as an Expert-by-Experience.
Conflicts of interest
None declared.
Touria
Touria is a mother, a restaurateur and a member of the Survivors2 advocacy group – a collective of current and former MSF beneficiaries who have come together to speak out for the rights and recognition of survivors of torture in Greece. Survivors2 speak out to raise awareness of the issues facing survivors, and for an immigration system in Greece based on dignity, justice and respect.
Ben du Preez
Ben is the Advocacy Manager at MSF’s Victims of Torture Rehabilitation clinic in Athens, Greece. He is responsible for building survivor advocacy at project level, based on over ten years experience of working with different Expert-by-Experience groups on a range of migrants’ rights-related issues.
