It will come as no surprise to the readers of my blog that I am a firm believer in the patient’s right to have a copy of their own data. In a recent conversation somebody asked me why this should be so for imaging data. After all, the patient cannot reasonably interpret their own CT scan.
Radiology is difficult to interpret. When I worked in an imaging lab that read data for clinical trials it was very common to have a new software engineer ask me if a vein was a tumor, and most commented that ultrasound looked like a TV that was unplugged. Even if you worked out the basic anatomy, learned the orientations, understood slice thickness and spacing, worked out the various pixel values meant (or did not mean) you still weren’t going to make a realistic interpretation any time soon.
I agree that in most cases patients should not interpret their own CT scans.
Having said this, there are wider issues at play with possession of imaging data. Unlike labs or other medical documents images are not typically stored in your doctor’s practice management system. Most likely there will be a report and a link to another system that specialises in medical imaging such as your local health information exchange.
At eHealth Technologies we’ve made a business of image enabling health information exchanges so that your doctor can see images. With the trend to specialists reading their own images more frequently, and relying less on the radiological report, this is essential.
While our business focuses on image enabling physicians, we have also worked with the RSNA on bringing the Image Share project to our customers and their patients. The idea here is that when you checkout post exam you are given a link and a pin to access your images instead of a traditional CD. This can be used at a later time when you visit your Dr’s office, or you can download the data and keep your own copy.
In the days before electronic storage of imaging exams up to 20% of films were lost by either the patient or the facility. While this number has greatly decreased there is still some loss that occurs. I’ve personally seen bugs in major vendor archives where large number of images have been corrupted for long periods of time. Try recovering from that situation with a backup or offsite copy!
In answer to the question as to why patient’s should have access to their scans I would say the obvious answer is that because the scan is an intimate measurement of their physicality that goes far beyond capturing images with a camera. They are allowing others to see inside them and that’s an inherently private experience.
A second answer that is less poetic, but more important, is that by having access to their data patient’s can safeguard against issues in transferring between networks, cyber terrorism, or other accidental loss. When we’re considering such important data a little prevention goes a long way.