Health Systems: Access to Care
How can optimal retinoblastoma access to care be delivered in low-resource settings (including rural and remote communities)?
Retinoblastoma occurs at a uniform incidence around the world. However, the survival rate is higher in settings that have more resources (e.g. developed countries). People who live in rural settings have been shown to face more barriers to healthcare. This is known as a ‘social determinant of health’ – or a non-biological factor that affects health status. Where one lives, what ethnic community one belongs to, one’s gender, or one’s level of education, can all influence how one experiences health.
Why Is This One of the Top 10 Retinoblastoma Research Priorities?
Globally, most children with retinoblastoma live in low-resource settings, and do not have reliable access to high quality treatment. This results in poorer outcomes than for those children who live in high-resource settings.
Personal Story
Studies have shown that patients who live in low resource settings are less likely to receive the recommended therapy. They experience less favourable outcomes as compared to those who have direct access to optimal retinoblastoma care. As a bilateral retinoblastoma survivor, growing up in the greater Toronto area, I had access to expert treatment centers with regular appointments and genetic counselling which have all been necessary to my continued health and wellbeing. The optimal level of resources and expertise should be available to all retinoblastoma patients. We need research that aims to implement approaches that address this gap and disenfranchise in rural communities across Canada as well as low resource settings globally.
RB Survivor
Progress Towards This Priority
Ongoing Research
| Researcher | Title |
|---|---|
| G. Chantada | Twenty-Year Collaboration Between North American and South American Retinoblastoma Programs. |
Completed Research
Patient Engagement Level For This Priority
Patient Engagement Legend
Limited or Unknown Engagement. For this priority, there is limited or no evidence that patients are meaningfully engaged in research.
Some Engagement. For this priority, there is evidence that patients are meaningfully engaged in some parts of research.
Full Engagement. For this priority, there is evidence that patients are meaningfully engaged in the full spectrum of research.
In order to promote patient engagement in retinoblastoma research, we have provided an estimate of the level of patient engagement for each of the Top 10 Priorities, based on what can be discerned from the published literature. This means we may have missed some research where patients are being meaningfully engaged, because it is not reported. If you think we’ve made an error, please let us know via email.