People with ID are not participating in medical treatment research

By Maurice Feldman, PhD
Brock University, Canada

Persons with intellectual disabilities (ID) receive medical treatments like everyone else. However, it is not clear whether persons with ID are invited to be part of research studies that help to find treatments that work. Because many people with ID have special medical conditions, if they are not included in the medical studies, then they do not know if the medical treatments available will work well for them.

What did you do in your research?
We reviewed 300 articles (published between 2007-2011) chosen at random from the top six rated medical journals that tested whether a treatment worked or not. We read the articles very carefully to see if the authors said that they included persons with ID in the study.

What did you find out?
Only 6 of the 300 studies (2%) we looked at included persons with ID. Most persons with ID could have participated in many of the studies (~70%) if the researchers had made some minor changes to their methods (such as asking questions out loud, rather than requiring the person to read the questions).

What are the take-home messages?
The study shows that not many persons with ID are participating in medical treatment research. So we do not know for sure if the treatments will work well with persons who have ID. Medical researchers may benefit from some education and support on how to include persons with ID in their research.

To learn more about these findings contact Maurice Feldman or visit the Project Website.

Full Journal Article
Feldman, M. A., Bosett, J., Collet, C., & Burnham-Riosa, P. (2014). Where are persons with intellectual disabilities in medical research? A survey of published clinical trials. Journal of Intellectual Disability Research, 58(9), 800–809.