Health Administrative Data for Research

Monica Neitzert and her brother Robert at a Blue Jays game

In 2012, H-CARDD researchers published the article "Using health administrative data to identify individuals with intellectual and developmental disabilities: a comparison of algorithms", in the Journal of Intellectual Disability Research.

Download the full article here.

We spoke with Monica Neitzert, policy manager at the Ontario Ministry of Community and Social Services, about what the research findings mean to her.

Brief outline of the article

The study compared three different strategies to estimate the number of people with intellectual and developmental disabilities in Ontario based on information from health administrative data. The number of people identified with developmental disabilities differed per strategy. This information is important for planning health care for people with developmental disabilities.

What did you find important in this article?

I am surprised at the magnitude of the impact that different search strategies have on the estimated proportions of people with various clinical and demographic characteristics. For example, I did not realize that the percentage of people with a developmental disability and a psychiatric disorder (dual diagnosis) would vary so much depending on the search strategy used. Also, I find it interesting that we see a clear effect of age on prevalence rates in all three groups.

How will you use the information from this study in your work?

Given that the proportion of individuals with a dual diagnosis appears significantly higher than has been reported elsewhere in the literature speaks to the  need to be planning services to meet the specialized needs of this group. Secondly, I think we need to continue to monitor new research results about the age-related patterns in prevalence rates in order to understand what causes these differences. Again, a better understanding of these differences will help us plan more appropriate services for people with developmental disabilities.

Do you foresee any challenges using this information in your work?

I don't foresee a challenge, but it will take some time to communicate the importance of this information to the people who can actually bring about change (i.e., senior decision makers and service providers).

How do the findings of this study relate to what you already knew or thought?

The prevalence rate seems higher in younger age groups. This difference resonated with me greatly. In my experience, I see fewer and fewer people with Down syndrome and more people with Autism. It makes me think that prenatal testing may be leading people to end pregnancies more frequently when they learn that there is a high risk of Down syndrome for their child.

How is this research relevant to you personally?

I have a brother with Down syndrome. I believe that the world benefits greatly from the presence of people with developmental disabilities, including Down syndrome, even if we do not quite understand this yet. We need to make the world a more welcoming place for all people with developmental disabilities, and come to understand their place and their importance.

Do you have any questions or comments to the authors of this article?

We always see more men with developmental disabilities. Is it possible that there is a bias against diagnosing women? Is there any age-related pattern for this?