Many people in Canada live with a disability but for some, having the proper label for their struggles can be hard to obtain.
“It’s such a privileged position in a way, to be (able) to have that, to get the diagnosis itself,” said Shireen Saxena, Ada Health vice-president of external affairs and chief of staff.
There are many barriers to accessing medical care and receiving a diagnosis, leading some to believe having a proper diagnosis is a privilege.
Some of the barriers in place include long wait times, lack of access to doctors and, in some cases, discrimination.
David Fourney, a person living with disabilities said that while a diagnosis is just a label it is critical in being able to access supports and resources.
“Is it a privilege to be a person with disabilities? Yes, absolutely. It makes you part of a unique group of Canadians with a unique set of lived experiences. But is it necessarily a privilege that you’re able to get access to a diagnosis? A diagnosis is really just a label,” said Fourney.
Fourney was born with a disability that was not caught until he was in his 40s and he had experienced a doctor giving him an incorrect diagnosis before the correct condition was found.
“As someone who was diagnosed with a particular disability in their 40s, right. I can certainly tell you that it took a long time to identify that this was an issue,” said Fourney.
One company, Ada Health, has developed AI software to help both patients and health-care professionals with understanding symptoms and determining possible causes and diagnosis.
“Ada is able to essentially process billions of symptom constellations,” said Saxena.
It does this by asking the patient a series of questions and searching through medical publications to determine the most likely causes of the symptoms, relevant research and probability of each suggestion to present to a health-care professional, in order to aid in the diagnosis and to determine which tests would be needed to confirm the suggested diagnoses.
This can help patients reduce the number of appointments and tests they could need to receive their diagnosis.
Programs like Ada can also help those who believe the diagnosis they received was incorrect
“Interestingly, I also was one of those people who had an incorrect diagnosis for 15 to 20 years,” said Saxena.
“After I started working at Ada, actually, while I was preparing for a demo with a client, I was having a very high pain day, and I ended up just testing Ada to do a demo with my own symptoms, and Ada suggested a completely different condition than any of the conditions that I had been suggested over a 15 to 20 years by a number of different doctors in three different continents.”
Fourney said it is important to discuss the issues and barriers when it comes to disability and diagnosis and work towards reducing or fixing them as anyone can be affected at any point in their life by disability.
“The reality is that everybody, everybody is a potential person with disabilities. You might not be disabled today, but you’ll probably be disabled tomorrow or next year or 20 years down the road,” said Fourney.