Steven Keating, a doctoral student at MIT’s media lab, decided to get his medical records. This was not easy. However, by pushing and prodding, he got hold of 70 gigabytes of his records. About 8 years ago, a brain MRI had shown a slight abnormality. He was reassured that it was ” nothing to worry about”.
However, when he started to have abnormal smells ( a type of olfactory seizure), he knew something was wrong. A new brain MRI was ordered. And his tennis ball sized brain tumour was discovered and then operated on.
Traditionally, patients do not have access to their records. The hospitals exercise a form of control by making access more difficult. Some hospitals charge excessive amounts to access records. Up to $300 for a set of records. However, patients have a right to access their health information at minimal cost.
Hospital medical record systems have been designed to be closed. That makes record sharing nearly impossible. Collaboration is constrained and the quality of decision making is reduced. Patients want and need the best brains working together to make decisions.
The impact of the internet and the Google effect, is that lack of access to one’s own medical records is seen as an absurdity.
At Rupert Case Management, patients have access to their secure online records from day 1. The result is that patients are fully aware of all the facts and are engaged in the process of discovery and treatment. That is the way that it should be everywhere.
source: New York Times News Service and Globe and Mail, April 3 2015