Today I met a patient with advanced colon cancer who was a seeking an opinion regarding her treatment options. She was diagnosed a few years ago and had received various chemotherapies that are standard for her type of disease. In reviewing her case, I sought records from her previous cancer center, which were stored in PDF form in the electronic medical record—the current digital standard amongst health care providers, hospitals, and clinics.
There were 143 pages in total, and there was no way to search through those pages for the most important information, forcing me to open and scroll through all 116 pages of the PDF. Complicating matters, each time I turned the page the text defaulted to size 6 font, making the information too small to read. Further, the CT scan images were not viewable - only the text of the CT report (found on page 74 of the 143 pages). In a search for any genomic testing, I finally came across only the front page of the test results. Additional content regarding various genes was missing.
As I sat frustrated and staring at the computer screen, having spent 45 minutes searching through these clumsy records, I wondered why we don’t have a system that simply consolidates all of a patient’s information from various hospitals and clinics into a single format, in a single location (cloud-based!), with easy search functions, that the patient owns themselves and can easily share. As an oncologist, I don’t always need all 143 pages of data, and I certainly don’t want to spend my precious time with patients digging through their documents.
When I see a cancer patient, I immediately need several specific pieces of data so that I can make the right recommendations and formulate the right treatment plan for them. I look right away for the pathology report, so I know exactly what type of cancer it is. I also need the CT scans so that I know the size of the cancer and where it’s located. In addition, I need their blood work to see their kidney function, their electrolytes, and their liver function, so that I know what treatments I can give them.
It’s this vital information that allows a doctor like me to treat the patient correctly, safely, and personally, in a way that is specific to their situation. Yet, despite its necessity to my work, this data is not readily available to me when a patient has been seen at multiple hospitals and clinics. Many institutions do not openly share data, which is exactly why we need a solution that takes all of this data and consolidates it all in one location so that a doctor can easily find it and review it, no matter where the patient has been seen previously.
If my patients had their comprehensive health history on a sortable, searchable Ciitizen profile, rather than clunky PDF files, it would not only make life easier, it would improve the quality of the care I can provide them.
Lincoln Nadauld, MD, PhD, is the Executive Director of Intermountain Healthcare’s Precision Genomics program where he oversees the clinical implementation of precision medicine across Intermountain’s 23 hospitals and 180 physician clinics.