There are many antiquated features of medicine: pagers, calling in prescriptions, dictating, and don’t get me started on fax machines. We. Still. Use. Fax. Machines.
But nothing seems as ridiculous as trying to track down records for a patient cared for at another hospital. Particularly imaging scans completed at one center, hoping to be independently reviewed at another.
EMRs communicating with other centers to access notes, labs, ER visits, and medications have been critically important to streamline care across institutions. It’s not perfect, but it significantly improves safety and efficiency. However, the inability to open and independently review radiology images is a huge blind spot (dorky neurologist pun intended).
As a pediatric specialist in rare inherited white matter conditions (leukodystrophies), the appearance of the MRI brain and spine are critically important in the diagnosis. A picture is worth a thousand words, or at least as valuable as next-generation sequencing. Families are shocked when they arrive for an initial consultation only to realize I’m unable to view the prior scans. I consider myself lucky if we can find the original report. But in rare disease spaces, the report may not adequately describe pediatric conditions. We need the initial scans uploaded to our system and re-reviewed by our neuroradiologists.
Specialists also want to review scans themselves. For example, when questioned about their independent assessment of brain scan results, most neurologists (90%) and neurosurgeons (93%) read both the report and the images; in contrast, about one-third of psychiatrists only reviewed the report.
So, we need a reliable way to upload and transfer imaging files. I don’t have any idea how to do it, just like you don’t have any idea how to treat metachromatic leukodystrophy.* But surely, we can do better.
The problem, best I can tell, is that the files are massive; like a single MRI containing hundreds or thousands of high-resolution images requiring gigabytes of data, in contrast to the file size limits (10 MB) of standard patient portals. Furthermore, the raw MRI files must be read by specialized systems (Picture Archiving and Communication Systems). Some EMRs, like Epic, use Digital Imaging and Communications in Medicine, which might not be used at scans completed in other systems. And I’m not sure how/if all of this information applies to plain films, ultrasounds, and CT scans that also need to be uploaded….
Lack of access to imaging studies performed at other institutions delays care (it may take weeks to track down images and get them uploaded to our system), increases cost (we often get stuck repeating urgent scans not readily accessible), and wastes valuable resources that could be used for other patients (like time in the scanner and anesthesia services).
For example, researchers looked at over 400 consecutive transfers to their urban, tertiary care, Level 1 trauma center. At least 50% of patients underwent repeat imaging, “resulting in transfer delay, unnecessary and increased resource use.” Of those, about 15% demonstrated different results, like being read as normal when prior reports were abnormal or noting abnormalities when read initially as “normal.” And the average additional cost, adjusted for 2026, was $4,600. The authors suggested the development of centralized radiology systems to improve independent review of these images completed at outside institutions.
Being able to quickly and reliably review previously completed imaging is critically important in time-sensitive evaluations. We recently* evaluated a child at our center with newly diagnosed metachromatic leukodystrophy (MLD), a rare, inherited brain disorder caused by arylsulfatase A deficiency, leading to progressive white matter destruction. As of early 2024, atidarsagene autotemcel is the approved gene therapy for the treatment of presymptomatic late infantile and presymptomatic or early symptomatic early juvenile MLD. Determining if children are “early” symptomatic enough to qualify for treatment involves rapid work-up. Tracking down prior scans destroys valuable time, as well as adding unnecessary diagnostic and prognostic uncertainty to already devastated parents facing their child’s life-threatening condition. As it turns out, we got this child to treatment, and they are doing quite well.
Overall, patients and families must navigate an endless, rocky stream of barriers to care. Physicians themselves face a mountain of useless tasks while delivering that care. Having imaging studies easily available in a centralized medical records system would go a long way to paving a path forward with a clear picture of the scenery.
How can health systems make imaging as portable and accessible as the rest of the medical record? Share in the comments.
*Details have been tweaked for patient confidentiality and artistic license, but now you know how to treat MLD; it’s been added to several state’s newborn screening to improve pre-symptomatic detection and access to effective treatment.
