Travel Bursaries and REFLECT 2018:
As mentioned in our previous post, this week’s blog entry concerns a comment made by Twitter user @unsuicide, who sent us the following message on the 14th of August regarding travel bursaries for REFLECT 2017, “Would like attempt survivors from FNIM[i]/remote areas to attend with registration/transport bursary. Travel’s prohibitive in Canada.” A message that was well-received.
In concert with this, I would also like to review something that troubled me about REFLECT 2017, described below, and advance some of the solutions our team has been considering in response.
I should preface this by saying that there was a great deal I liked about REFLECT 2017. I am proud of the work of my colleagues who presented at and organized this event, and I think that the principles of patient-oriented research are vital and necessary, particularly in the case of suicide prevention research. We are all learners in our pursuits, and in many ways, I believe that the REFLECT forum was a great success. However, there was one major way in which I think this event failed; a failure that is directly linked to the concern expressed by @unsuicide above. REFLECT 2017 did not include a single presenter from any of the remote, northern communities most impacted by suicide in Canada.
Not that the topic was not addressed. In fact there were 3 different, excellent presentations on suicide in northern, aboriginal, Inuit and Innu communities; communities who face suicide rates up to 11 times higher than those of the national average. And yet, none of these talks were presented by representatives who actually live in these places. Given that the stated aim of this conference was the inclusion of patient experience into research, this omission, to my mind, constituted a glaring contradiction between the practice and the objective of the event. I was also not the only one who felt this way. We received feedback from attendees who expressed their disappointment at the level of engagement with northern communities.
While I would very much like to explain the specific difficulties that gave rise to this exclusion, at the same time, I am not interested in excusing or redeeming these choices. This is a report of a failure, and I feel that the best way to address this failure is not to elaborate its causes and to outline potential solutions. This said, I think it is worthwhile to underline the point made by @unsuicide: travel is prohibitive in Canada, especially so when it comes to remote communities.
As an example, a return flight from Iqaluit to Ottawa costs somewhere between $1,455.00 and $2,870.00, a figure that does not account for any additional float-plane, bus or fuel costs that would be incurred if a representative did not live in the population centre. Even if the entire budget of a typical conference was spent on providing travel bursaries for people from these areas (which would make it impossible to rent space, provide food, etc.), the number of individuals who could be accommodated would sit somewhere between 15 and 30. If we account for typical conference expenses, this number would likely drop to somewhere between 2 and 5.
These financial barriers make the provision of travel bursaries prohibitive. A presenter or two from these communities might be accommodated (and I am committed to seeing this happen), but the inclusion of patients and care-givers in a substantive sense, one that adequately represents the needs of the numerous, distinct northern communities, is daunting to say the least.
Whose Turf? Engaging Respectfully:
In thinking about how to address this problem, I was influenced by the position of one of REFLECT’s presenters, Julie Kathleen Campbell, who described her clinical work in Nunavik. One of her key messages was this: if you want to work with a community significantly different than your own, you have to meet that community on its own terms. In her own words, “their playground, not your playground.”
With this in mind, the disadvantage of bringing one (tokenism), two (not enough), three (getting there?), or more delegates from indigenous or northern communities is that it is still operates on “our” (southern/settler/academic) terms, in “our playground,” within the delicate confines and double-speak of the contemporary academic research conference.
The point made by @unsuicide remains crucial. Funds should be made available for people with lived experiences and patients who want to attend a patient-oriented conference. And yet, I also find myself wondering: does the transport of people from remote communities to “our turf” constitute an adequate form of patient engagement?
With a thousand Audio-Visual horror scenarios suddenly flashing through my mind, I’m going to suggest that for next year, we try to use the Internet a bit more. Panels and presentations on indigenous suicide would benefit not only from indigenous speakers, but also from online access by interested community members. While communications infrastructure and the state-of-the-art in webcasting still presents us with a plethora of problems, careful deployment of fail-safes (e.g. having back-ups available that make use of conventional telephone, e-mail, and/or text; rigorous pre-conference network testing; having site-specific, local plans in place for when technology fails) and a clear assessment of the telecommunications resources available in particular regions (availability and reliability of high-speed internet connections, maximum bandwidth, level of dependence on satellite, etc.) would go a long way to establishing and maintaining communications, and would assist in identifying the most appropriate applications and technologies to be used in this endeavor. Newer web-based applications such as sli.do[ii] and VoxVote[iii] may also allow for participants engaging remotely to weigh in on which questions they consider the most important, and interact with conference participants at the host site.
What Can Be Done?
What would this process look like in practical terms? Well, the first step would be to identify which areas have reliable broadband access, either on an individual house-hold basis or within some central gathering space (i.e. a community centre or a hospital). There is some reason to be optimistic on this front. In 2014, and again in 2016, the Federal government initiated a plan to provide stable broadband access to Northern and remote communities. They have been tracking their progress here: http://www.aadnc-aandc.gc.ca/eng/1352214337612/1353504776242. According to the information they’ve provided, a number of areas can now claim a significant level of access to web-services. However, with a standard of 1.5 Mbps compared to the 30 Mbps accessible by most city-dwellers, these services exclude access to streaming of high-quality video content on platforms such as Youtube.[iv]
For those communities that have reliable access at home, the process would be similar to any other webcast or live-tweeting of an event. Targeted promotion of the event several months in advance should provide interested individuals with an opportunity to follow the proceeding from their computer, and would similarly facilitate the broadcast of presentations from these locates. Audience questions could also be registered through an application like sli.do or VoxVote, enabling remote participants to weigh in and address presenters at the host sites. Features such as the ability to “like” particular questions from a list generated by the audience would also ensure that the inquiries most pertinent to the group at-large would receive appropriate coverage and attention.
For those communities whose telecommunications infrastructure is more limited, special arrangements would need to be made. In these instances, the closest central location boasting reliable Internet access would have to be identified, along with a local representative who would be willing to help make arrangements for a community forum. These organizers should be compensated for their time, and funds should be made available to assist interested community members wanting to travel to this forum. In these cases, there should be two meeting agendas developed, one that assumes a stable or unproblematic connection with the host-site, and another that assumes a limited or failed connectivity. In those cases where the web link to the host site fails, this would allow the group gathered to hold their own discussions, identify priorities and problems that are important to them, and contribute these insights as soon as a connection is re-established. Having this sort of back-up agenda, along with a process of integrating and discussing these insights as soon as they become available, is crucial in order to ensure that the satellite sites are never made to wait idly while connection with the host-site is re-established.
What Has Been Forgotten?
This is an imperfect schematic of what could eventually become a workable plan, but there are numerous other considerations that must also be accounted for. Audio linkages must be clean and clear (having an internet-connected microphone available so that the presentations are heard on both sides), making translators available where needed and compensating them, having access to technicians for trouble-shooting during the event, and staggering the event over time so that challenges can be addressed and sites re-connected. There are also a host of other things left unconsidered here, and additional failures are inevitable, but I have more than a little faith in the democratizing potential of the Internet, even while it proves an occasional or frequent disappointment.
I encourage anyone with expertise in this area, specifically telecommunications in remote regions and the Canadian North, to reach out to me. In particular, we need to better information on the practical realities of telecommunications in Canada’s remote communities. Which areas have the most reliable broadband? Which areas have the least? How frequent are service outages? How much are long-distance phone costs? What does cell coverage look like? Where can we find community centres or other places that could accommodate patient gatherings? Are steaming services like Skype or Google Hangouts too data-intensive to be practicable?[v] Are there alternate web-services that might serve as suitable replacements?
These and many other questions need to be answered. Indeed, it is part of the work of patient-engagement to seek out such questions and struggle with them; to listen and respond to the needs and demands of service-users as part of an ongoing commitment to inclusivity. So while REFLECT 2017 was the first of its kind, and failing is part of trying something new, if the challenges discussed here are not addressed in some manner before next year’s event, we will have failed in a much deeper way. We will not only have failed to listen, we will have missed the opportunity to teach ourselves how to listen, and how to make space for such listening to occur. Such a result, the exclusion of hundreds of expert voices, cannot be anything but a profound failure of patient-engaged, suicide research in Canada.
[i] FNIM (First Nations, Inuit, Métis)
[v] Since writing this article I have been informed that many people in the north use Facebook Live Video as an alternative. We are looking into this as a possible tool for REFLECT 2018.