Along with the brain, the eye is one of the human body’s most intricate components, an elaborate collection of parts working in tandem to do one thing: gather external light and focus it on a small area of tissue at the back of the eye. Cells housed in the tissue absorb light particles and transmit information to the brain, which in turn forms a “picture” of what we see.
It is perhaps unsurprising, then, that when the eye, that most complex of body parts, doesn’t work as it should, the pathways to treatment and for the management of vision loss are equally complex.
The nebulous web of programs, policies, and instructions that constitute vision care in Canada can be difficult to navigate, which is why the Foundation Fighting Blindness has developed an online tool to help guide patients toward their optimal pathways: we call it Vision Care Pathways, and it functions as our premier guide to eye disease and patient information.
Accessed through the Eye Diseases & Pathways section at the top of this site, the tool connects individuals to relevant information on ffb.ca through the lens of one’s eye disease. Selecting retinitis pigmentosa, for example, will take you to a page that provides an overview of the disease. From there, the page covers the essential points related to the disease’s “symptoms and diagnosis,” as well a summary of “existing treatments,” if there are any.
In relation to clinical trials, the page includes a mechanism that links to the site clinicaltrials.gov, a database of trials offered globally, automatically populating the name of the eye disease and performing a search for relevant trials. We also provide information to orient patients in the complicated and often shifting world of clinical trials, including a disclaimer that explains some of the problems with clinicaltrials.gov (the site is run by the National Institutes of Health, a US health agency, but the trials are not vetted or quality-checked).
If the disease is an inherited one (i.e. one that is primarily genetic), the page will also have a section describing the FFB-run Patient Registry, a secure database that can directly connect Canadian patients to clinical trials. And every eye disease page has a section that describes emerging developments in research and health policy, called “research developments and health policy,” as well as a list of education resources relevant for all patients. To ensure information on each disease is up-to-date, new content relevant to the disease updates automatically in a news scroller along the side of the page.
The Vision Care Pathways tool is a patient-centered approach to providing Canadians living with vision loss and blindness with the best information possible, empowering them to locate their ideal pathways through vision care—but our work isn’t finished. The pages were designed to be as accessible as possible, but we still have people going through content to ensure this is the case. We also have plans for additional video content that will supplement the written information on each page, as well as location and disease-specific lists of ophthalmologists and low vision specialists.
Your input on this tool is incredibly valuable. Please let us know what you think, or whether you encounter any difficulties, by emailing Dr. Chad Andrews at firstname.lastname@example.org.