What is it like to live with a blinding eye disease in Canada? Do you have access to the vision care resources that you need? How can the FFB help to improve your vision health journey? These are the questions that motivate the FFB’s Vision Care Pathways project, an initiative that aims to help you find your best path through vision care today and in the future.
At the FFB, our goal is to develop educational resources that meet your needs and give you tools that will enable you to advocate for your own best care.
To learn more about your experiences living with vision loss, we developed an online Vision Care Pathways survey. Thank you to everyone who took time to share their experiences. And thank you to the Joan and Clifford Hatch Foundation, Bayer Healthcare, L’Occitane and Alcon, for their generous support of the Vision Care Pathways project. Your feedback continues to guide our work, so please consider filling out the survey if you haven’t already.
We are sharing key findings from the Vision Care Pathways patient survey because this information is shaping our plan to develop better educational resources.
HERE IS WHAT WE LEARNED FROM YOU and HOW THE FFB IS RESPONDING:
Which healthcare providers are part of your circle of care?
For many of you, your vision care team includes your ophthalmologist (73%), your optometrist (57%), and your family doctor (51%). Other members include social workers, psychiatrists, and mobility specialists.
These findings reveal the key members of your vision health team. We are working to make sure that these healthcare providers have clear information about your eye disease and tools to access additional information through the FFB.
What community services do you use to help with your condition?
Some of you indicated that you use the CNIB’s services, but most of you are not using any community health services to help with your condition.
In response, we are working to develop a resource that will help you to identify and access your local community vision health services.
How satisfied are you with your current vision care?
Your answers to this question highlight the inequities in vision healthcare. Based on a scale of zero to four, with zero being extremely dissatisfied and 4 being extremely satisfied, there was a fairly even distribution across the spectrum.
At the FFB, we are working to understand why some people have better experiences than others.
How do you prefer to obtain information about your condition?
Most of you (80%) prefer to get information directly from your eye specialist. Your next preferred mode of information is the internet (64%). Only some of you like to obtain information from print material such as pamphlets (26%). You told us that it was important to have more video and audio resources because reading can be a strain.
In response, we are working with ophthalmologists across Canada to develop more video content that will allow you to get information on the internet directly from your specialist. You can watch and/or listen to our recent interview with Dr. Brian Ballios about emerging vision research and treatments.
What resources do you wish were available to you, but are currently lacking?
Your thoughtful answers to this question are guiding our development of new resources. We learned that there is an overwhelming need for more basic information at the time of your diagnosis, and an ongoing need for more specialized, up-to-date information about clinical trials and emerging treatments.
Thank you for the positive feedback that you shared about FFB’s online resources! Many of you said: “I wish that I learned about the FFB when I was first diagnosed.” We wish that was the case as well and are developing partnerships with vision care providers to help spread the word about the FFB’s educational resources.
At the FFB, our goal is to be your trusted information source about vision research and emerging treatments. The research landscape is constantly changing, which is why we regularly update our website with new information, including a monthly e-news and “Let’s Talk Research” video update. Thank you for telling us about the resources and research that are most relevant to you and your loved ones.