Accessing medical information from doctors is a challenge

By Susan Parish, PhD, MSW
The Lurie Institute for Disability Policy, Brandeis University

There is limited information available about whether or not women with intellectual disabilities (ID) receive screenings for cervical and breast cancer. Much of the available information is reported by the woman with ID or a caregiver. It can be difficult for people to remember when their last screening was, so we need information about these screenings from medical records instead.

What did you do in your research?
In our study we tried to collect medical record data for women with ID. We asked their doctors for dates of cervical and breast cancer screenings and physicals. Then we described how we went about getting the women's medical records and how successful we were getting this information.

What did you find out?
We found out that it is very difficult to get medical information from doctors in the community. Sometimes doctors' offices did not respond to our requests despite a number of attempts at contacting them. Other times doctors only sent us part of the information we requested. We were more successful at getting information in later years (2008 and 2009) than earlier years (2006 and 2007). This was partly because the women in our study had changed doctors during that time and sometimes did not remember who their previous doctor was.

What are the take-home messages?
Researchers who want to collect information from the medical records of women with ID living in the community need to have enough staff and resources to collect the data. They should also have other people such as family members or case managers to help identify the women's physicians. Finally, researchers should be aware that data from earlier years would be more difficult to collect.

To learn more about these findings contact
Susan Parish.

Full Journal Article
Swaine, J.G., Parish, S.L., Ghosh, S. Luken, K. and Wright, G.A. (2013). Obtaining medical records for women with intellectual disabilities in a community-based health promotion intervention. Journal of Policy and Practice in Intellectual Disabilities, 10(1), 54-61.