Sub-Saharan Africa Neuro-Oncology Collaborative (S-SANOC) 2017 Report
work and participate together. There is a lot of talent but few opportunities and people who do undertake education and training must know that they are doing something worthwhile. Often this is not the case. If you do training, such as a three-day course, how do you follow-up to see what impact it has? People need to feel that they are ‘adding value’. An initial enrolment fee could be refunded after completion, to serve as an additional incentive. We need money, but we also need value.”
Jason Huse: “What this hypothetical meeting would achieve is awareness-raising, information transfer, communicating best practice, networking, practical skills training, promoting research, and the bringing together of a society. Probably not all of these objectives can be accomplished practically in a two-day meeting. What, therefore, is the priority and what creative ways can be employed to achieve these goals?” Gelareh Zadeh (Division of Neurosurgery, University of Toronto, Canada): “The diversity in sub-Saharan Africa is present due to geopolitical issues. But in North America, there is also great diversity and under-resourcing. The barriers in Africa need to be overcome, but diversity is not unique. Regionalisation is not necessarily a bad thing. Advocacy can be a binding force. Resources could be put into a web-based activity, which would help bind people together, but do we want this before we have a meeting? This should not be a one-time event. We could all make a commitment for five years or more.”
Above: Shungu Ushewokunze stressed that it was important not to start out in too complicated a way.
Shungu Ushewokunze (Sheffield Children’s Hospital NHS foundation Trust, UK): “There are 46 countries in sub-Saharan Africa. But in this room, we are representing less than ten of them. We need to do something simple, not complicated. It is going to cost a lot a money to transport people and make an event accessible.” Teddy Totimeh (Greater Accra Regional Hospital, Ghana): “In support of a proposed course/conference, it should serve as a springboard for greater things. This is the first conference. But I hope that there are many more. I agree that webinars and online courses are a good idea and these could follow a first conference. I want to see a unified sub-Saharan patient body, and one for professionals, which communicate regularly with each other. I hope that the conference would be the seed. When created, it would validate brain tumour stakeholders, offering them the legitimacy and confidence to approach larger funding bodies for financial support. It should be the start of planning for something bigger.” 34
Photos by MVF Studios
Above: Dr Brian Nyatanga said a clear definition of what patient advocacy is in sub-Saharan Africa would be needed
Dr Brian Nyatanga (Centre for Palliative Care, University of Worcester, UK): “How strong are the bridges? We need a clear definition of what patient advocacy is. What is the interpretation of patient advocacy and how do people understand it? Advocacy suggests that people with a brain tumour cannot speak for themselves. Does this create dependence? Is it not better to create something that empowers brain tumour patients so that they can stand on their own two feet? We may not be able to provide