The 21st Century Cures Act (https://www.congress.gov/bill/114th-congress/house-bill/34) is well intended. The Cures Act Final Rule (https://www.healthit.gov/sites/default/files/page2/2020-03/TheONCCuresActFinalRule.pdf) supports easy access, exchange, and use of electronic health information. Patients have always, of course, had access to their health information, but it wasn’t always easy. Patients had no ready access to the information in their chart and no simple way to get it. Even patients seeking a second opinion would need to go to some storage facility with a “permission slip” of sorts to have their records copied and handed over to them. The records were in no particular order and some of the records, like progres notes, were unintelligibly handwritten and uninterpretable. The electronic health record (EHR) has fixed that problem, thank goodness!
Currently, most patients have access to a version of the EHR with sections sorted by category so they can, in real time, see our notes, read the radiology reports, and view the laboratory results. All good, right? In my opinion, for the most part, the answer is “yes.” But in oncology, special problems arise. Consider, for example, the patient who undergoes a CT to investigate for a cancer recurrence, with the scan done 4 weeks before their appointment with you. A “suspicious lesion in the liver” is reported. In this case, don’t expect the patient to quietly wait 4 weeks to see you. This report would naturally generate a query in the chart from the patient, and something would need to be done now. You respond to your inbox, confer with the radiologist, and determine that the lesion is probably a blood flow artifact that can be observed.
However, if you were able to review the report ahead of time, you could have reassured the patient at their scheduled appointment—in advance of their access to the report. Their anxiety would have been allayed, and your time could have been used more productively.
In general, I find radiology reports vexing in this regard. These reports are not written for lay consumption, and even with years of experience I often find myself calling the radiologist to explain a finding. How much harder it must be for someone without a medical background. In fact, half of each visit with my patients is now spent trying to explain the findings on the reports, most of which is not relevant to their care.
At the same time, I am not sure what the solution is. I value the detail and care that the radiologists in my institution provide when interpreting findings. Perhaps more standard language would be helpful, and perhaps better wording as well. What exactly is a “suspicious new lesion”? Did it possibly commit a crime? Wouldn’t the word “indeterminant" be better?
You might think that patients would pour over the notes for accuracy, but that doesn’t seem to happen. I have had only one patient offer a correction about a detail in the family history. To be safe, however, I always write about the patient in a complimentary way and use language such as “my treatment is not working” rather than just stating that the disease is getting worse. It’s a small thing, but it puts the onus on me and hopefully avoids any concern the patient might have about some failure on their part.
Ultimately, I applaud the intent for more transparency and ready access to health information for patients, but also feel that we need to strike a balance. I personally think that biopsy, radiology, and laboratory results should be held for a reasonable period to allow for time to meet with the patient, hopefully conveniently by video, to explain the results. I don’t think that is too much to ask.
MARGARET TEMPERO, MD
Margaret Tempero, MD, is a Professor of Medicine and Director of the UCSF Pancreas Center and editor-in-chief of JNCCN. Her research career has focused on pancreatic ductal adenocarcinoma, especially in the area of investigational therapeutics. Dr. Tempero has served on the ASCO Board of Directors and as ASCO President. She currently serves on the ASCO Conquer Cancer Foundation Board. She codirected the AACR/ASCO Methods in Clinical Cancer Research and taught this course and similar courses in Europe and Australia. She was founding Chair of the NCI Clinical Oncology Study Section and served as a member and Chair of the NCI Board of Scientific Counselors Subcommittee A. She is a member of the Scientific Steering Committee and Chair of the Clinical and Translational Study Section for the Cancer Prevention & Research Institute of Texas. She is or has been on the Scientific Advisory Boards of the Lustgarten Foundation, the Pancreatic Cancer Action Network, the V Foundation, The Alberta Canada Cancer Board, and the EORTC. She served as a member of the Oncology Drug Advisory Committee for the FDA. She has served as Deputy Director and Interim Director for the UNMC Eppley Cancer Center. She is Chief Emeritus of the Division of Medical Oncology at UCSF. She served as the founding Deputy Director and was later Director of Research Programs at the UCSF Helen Diller Family Comprehensive Cancer Center.
