Advocacy Survey 2017

In 2017 we asked: What does Brain Tumour Foundation of Canada need to be advocating for on behalf of the brain tumour community in Canada?

The results are in!

Survey reveals new #1 priority for brain tumour advocacy 

Brain tumour patients and survivors from across Canada have spoken and they want better and equal access to new drugs and treatments. 
 
In fall 2017, we asked all those affected by a brain tumour about the issues on which Brain Tumour Foundation of Canada could focus advocacy efforts. Participants ranked 13 pre-identified issues in order of priority. The most important issue was access to new drugs and treatments with the largest number of participants ranking it as their Number 1 priority. 
"Access to new drugs and treatments is the ultimate hope," wrote a respondent. 
"Survival depends on having access to latest drugs and treatments. You can have the research and know what helps, but if you can't get it then it's no use," another wrote. 
Awareness about brain tumour signs and symptoms was a close second, compared to its first-place ranking in the 2012 advocacy survey by Brain Tumour Foundation of Canada. 
 
Research support and access to supportive care resources were also identified as high issues of importance. The potential health effects of cell phones remained a low priority, similar to its ranking five years ago. 
 
The survey also revealed strong support for the brain tumour registry and how this data collection could help other advocacy issues. These results will help build awareness and support our efforts to mobilize the government in the coming year.
"Without counting, we are only guessing about how prevalent this is. It could be worse than we think, we could be missing the mark on research and funding for that. Without this data, we don't have a great place to advocate from."
"Counting each brain tumour in Canada can help with the research."

By the Numbers

  • 132 surveys were returned to Brain Tumour Foundation of Canada with respondents from nine provinces and one territory
  • 53 per cent of participants were either a brain tumour patient or survivor, with 29 per cent being a friend or family member
  • 46 participants ranked the financial burden of a brain tumour diagnosis within their top five priorities 
  • Almost 30 per cent (with the most agreement among all stakeholders) chose access to new drugs and treatment as their No. 1 priority
  • 18 per cent see awareness of brain tumour signs and symptoms as the most important issue
  • 16 per cent of participants selected research as their second highest priority
  • 15 per cent of people supported data collection as a priority No. 5 five, with few people thinking it should be a low priority 
We want to thank all of you who participated in this survey to help Brain Tumour Foundation of Canada ensure all those affected by a brain tumour have the information and support to fully participate in all aspects of life. Your input is invaluable to our Advocacy Committee who will use this information to develop and formalize positions on issues directly aligned with what matters most for the brain tumour community.  
 

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