“I recently met with an advanced colon cancer 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,” Dr. Lincoln Nadauld, recently recounted; “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.”
As the director of Intermountain Healthcare’s Precision Genomics program, overseeing the clinical implementation of precision medicine across 23 hospitals and 180 physician clinics, Dr. Nadauld understands that his time with each patient is precious. “Complicating matters,” he continued, “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. 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.”
Rather than focusing on treatment options, Dr. Nadauld instead spent 45 minutes searching through these clumsy records, staring at the computer screen while utterly frustrated. “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,” he added; “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 oncologists meet with cancer patients, they need several specific pieces of data to make the right recommendations and formulate the right treatment plan for them: the pathology report, so they know exactly what type of cancer it is; the CT scans, so they know the size of the cancer and where it’s located. In addition, oncologists need to see blood work to understand kidney function, electrolytes, and liver function to know what treatments they can give the patient.
“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,” Dr. Nadauld continued; “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,” Dr. Nadauld summarized, “rather than clunky PDF files, it would not only make life easier, it would improve the quality of the care I can provide them.”