Evidence of meeting #118 for Health in the 42nd Parliament, 1st Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was diseases.
A recording is available from Parliament.
Liberal
Clinician Scientist, Children's Hospital of Eastern Ontario (CHEO)
It's a big question, and Mike spends a lot of time looking at this.
With regard to the genetic sequence for sure...and on the actual description of the disease, there's something called the HPO, the human phenotype language that Mike uses.
Do you have anything to add?
Professor and Scientific Director, Centre for Computational Medicine, Hospital for Sick Children, As an Individual
I would just mention that a lot of these registries are driven by either researchers or clinicians who have information.
There needs to be much more of a push to get more information directly from patients. Information coming straight from patients is obviously going to be in some cases less reliable, but there are going to be aspects of a disease that a clinician never sees, things that happen only at night, or things that affect the patient significantly but don't make it into what they discuss with their clinicians.
Osgoode Hall Law School, York University, As an Individual
Yes. For example, I have seven different symptoms associated with my disease, but I never put them together. Growing up, I would talk about one or the other when I went to see my doctor, or about whatever was bothering me that day or that week.
If I could record what was happening to me on an ongoing basis and that would be somewhere, like in a registry, with other people just like me, who knows...?
Liberal
Liberal
The Chair Liberal Bill Casey
The time is up, and I'm sorry it is because I feel that we've just scratched the surface of the knowledge that you can impart to us on this issue.
Clinician Scientist, Children's Hospital of Eastern Ontario (CHEO)
We are very eager to.
Liberal
The Chair Liberal Bill Casey
Dr. MacKenzie, you wanted to make a comment on Mr. Kmiec's question and I missed it. You signalled that you wanted to make a comment. I don't remember the question, but if you remember the question, you're certainly welcome to comment.
Clinician Scientist, Children's Hospital of Eastern Ontario (CHEO)
I think I was just twitching, perhaps. I don't know.
Clinician Scientist, Children's Hospital of Eastern Ontario (CHEO)
I do want to say that the calibre of questions was very impressive. There was real thought brought to bear.
Liberal
The Chair Liberal Bill Casey
The quality of our committee makes my job very easy, it really does, as does the quality of our witnesses. Our members do their homework. It's the most productive committee, I think, and we have the best witnesses.
October 25th, 2018 / 9:25 a.m.
Conservative
Liberal
The Chair Liberal Bill Casey
I want to ask Mr. Stedman a couple of questions.
Your daughter was diagnosed at birth.
Osgoode Hall Law School, York University, As an Individual
It took almost two years.
Osgoode Hall Law School, York University, As an Individual
I've had it my whole life.
Osgoode Hall Law School, York University, As an Individual
My mother was also diagnosed. I just keep her out of it.
Osgoode Hall Law School, York University, As an Individual
Yes, in her sixties.
Osgoode Hall Law School, York University, As an Individual
It's genetic. We don't know. We can't trace it back. Her mother was already on her deathbed. We don't know where it came from after that. We've since found it in two of her siblings and some of her nieces and nephews.
