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Will the “voices of victims” finally be heard in Vancouver?

By Shakira Choonara
on February 25, 2015

Throughout the Third Global Health Symposium 2014 (Health Systems Research, Cape Town, South Africa), attention was continuously drawn to the fact that the voices of the “victims” of weak health systems were missing from the symposium. There was a unanimous call to ensure that these people would be included in future HSR conferences.

Recently, Emerging Voices (EVs 2010 – 2014) brainstormed via e-mail interaction on what it would mean to actually include “victims” at conferences. The discussion began with the negative implications of referring to patients as “victims”. There were those who argued that the term “victims” would leave patients feeling disempowered. Others argued that the reality is that some patients are victims of weak health systems and we cannot avoid using this term. Weak health systems obviously refer to those in developing/underdeveloped contexts. This brings the development debate (of what we as researchers perceive development to be versus how “victims” perceive development) to the forefront. By this I mean, we as researchers might assess certain health systems as weak or underdeveloped, and we typically classify patients who use these systems as “victims”. However, we do not consider the possibility that these patients might actually feel that their health systems are adequate, that they are receiving effective care and hence do not consider themselves “victims”. Moreover, these “victims” might also not consider health care to be their most pressing issue and might want to be involved in economic development or food security conferences instead of HSR conferences!

The discussion then focused on the following question: who exactly are the “victims/patients”? There was concern on how to define the selection and inclusion criteria of “victims”, i.e. who would these “victims” be, would it be patients with HIV or patients with malaria, would it be male patients or female patients, would we be including children or adults? Perhaps, we ourselves as researchers could also serve as “victims”. What would be the boundaries of including or excluding “victims”?

Other practicalities to consider include logistical challenges such as attaining visas, costs, how would victims write an abstract/be included in the conference, how will discussions be conducted to bridge the gap between everyday life and health systems jargon. A few EVs highlighted examples whereby some researchers successfully raised funds and included patients at health conferences. The highlighted challenges do however need to be addressed before we can ensure that “victims” will be included at the next Global symposium in Vancouver, not exactly the cheapest place on earth.

The 2014 Global symposium in Cape Town already made strides in introducing innovative formats through thought provoking plenary sessions, fishbowl sessions and screening of short films at the opening ceremony (and a few sessions such as the Health Inc session which showcased an excellent documentary – featuring some “victims” who seemed to understand certain schemes far better than came out of the ‘data’). Much more is still needed in this regard, though. A balance needs to be struck between maintaining the academic nature of oral and poster presentations and also making way for advocacy and showing the real realities on the ground. Presentations at the 2014 symposium were still mostly academic in nature; the voices of the “victims” per se were lost. During presentations (oral and poster) there was the standard emphasis on the hypothesis, literature reviews, and methodologies. Findings of many poster and oral presentations were masked and limited to conform to academic standards. (“Victims” of academic rigour, if you want)

The suggested theme for the next Global symposium in Vancouver, “Looking to the future: equipping health systems for a changing world”, certainly makes space for including the voices of the marginalised and other victims, be it through the rethinking community participation sub-theme or even the climate change sub-theme whereby we will all be victims sooner or later (although some unfortunately much sooner than others). In terms of including “the voices of victims” some sub- themes do of course take precedence over others. A possible recommendation in order to include “the voices of victims” is not to fly them all the way to Vancouver – although it would be a great way to annoy Stephen Harper’s government – but for EVs and other health systems researchers to move away from the standard academic presentation format and instead present research realities, advocate and make way for those interested to pursue new formats of academic presentations, to put our findings in their raw “in our face” format, to allow controversy and a new exciting way of conferencing.

Presently, as researchers we have been entrusted with the “voices of the so-called victims”, but we lose much of the poignancy of their messages by trying to meet academic standards, so in a way we end up masking their voices.  The EV venture is seen as a means of fostering South-South connections as well as moulding future leaders in the field with fresh and innovative approaches. The EV training thus far has provided an excellent stepping stone for these young leaders to think “out of the box”, be bold, and communicate effectively.  A resounding majority of EVs agree that the voices of all “stakeholders” need to be heard.  The responsibility of changing the way things are done undoubtedly depends on these very EVs to advocate for this. Starting with Vancouver.

Lastly, to be clear, if we are able to fly victims all the way to Vancouver and beyond, by all means we should do so. But it feels a bit early to say who these victims are and how they will fit into the conference – this is a discussion which certainly requires further debate. In the meantime the only way to ensure that health systems will be “equipped for a changing world” seems to be to advocate for HSR conferences to ensure that “voices of victims” be heard louder and clearer.

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