Debatable

November 2023

“As part of the 21st Century Cures Act, in April 2021, new federal rules went into effect mandating that healthcare providers make nearly all test results and clinical notes immediately available to patients. The regulations give patients easier access to their digital health records through their smartphones.” https://www.fiercehealthcare.com

The implementation of this congressional act has surely caused discussion amongst medical professionals and patients alike. The Cures Act went into effect while I was participating in my second clinical trial and I quickly learned that it was in my best interest (because I couldn’t stop myself from looking) not to jump to any conclusions regarding my test results before my doctor had the opportunity to go over them with me. Recently, I asked members of one of the support groups I participate in: ‘Do you like having immediate access to your test results’? And while my patient survey was small, the unanimous consensus was a contemplative yet head nodding, yes. The overwhelming reasons why immediate access is important to this group is that it allows time for preparing questions that address concerns while cutting time spent in anxious waiting for a phone call or doctor’s appointment. We are currently all stage 4 patients and our time is precious. In contrast, we have members in our group who live in Canada and have universal health care and their experience is drastically different from ours here in the U.S. One of our Canadian member’s shared that it can take many days to weeks before a patient hears from their doctor and/or gets access to their test results. ”This approach is too long, too slow and too stressful.” She said. 

But what happens if a patient gets potentially alarming test results that need clarification as well as context to be interpreted correctly? I have read several articles that gave examples of people receiving shocking test results that they were totally unprepared for. While the Cures Act has opened the door for immediate access, it also highlights that the choice is the patient’s alone to either look at their test results before hearing from their doctor or waiting until after their doctor has had a chance to interpret the findings. Sometimes making that choice is easier said than done especially when text or email alerts flash across your smartphone screen telling you that there are new test results in your patient portal. Curiosity can get the best of us. This understandably seems to be the overriding concern of the medical community according to the articles I’ve read and the pros and cons debates I watched. Many it seems are now fielding calls and messages from alarmed or confused patients wanting/needing immediate clarification of their results, often times before the doctor has had the opportunity to read and analyze the test results themselves. This in turn can cause undo stress not only for the patients but also for the doctors.

But let me propose a different scenario. Imagine yourself in this true story. What happens when results hit the patient portal and its obvious (at least to you) that the results are flawed as in, they might be someone else’s? Can that happen? Yes, it can. Does it happen often? I assume not. Here’s the dilemma; will you become the patient who is perceived to be overreacting because she read her lab results as soon as they hit the portal and the results were alarming so she sends a message saying please review and by the way, please reference this particular result because it’s virtually impossible (in this case) for that specific number to change that drastically within 30 minutes. She also asks for a new blood draw. Getting return messages that are patronizing at best most definitely does not help matters but she gets an appointment for a new draw. However the orders are absent when she arrives so she enlists others to help in her quest. Blood drawn, hand delivered and tested. New results are delivered to her portal. All is well.

The upshot of this drama – the first blood sample was mislabeled. Consequentially the wrong results were posted to her patient portal.

So now I ask, in this scenario, yes, it is extreme but none-the-less it happened, if she hadn’t looked at the first test result findings and asked for new blood samples to be drawn and then pleaded her case for follow through, would it have been assumed that the mislabeled results were correct? Would that have effected her treatment or care in general? We will never know the answer to these questions because our vision in hindsight is twenty-twenty.  Suffice it to say that advocating for oneself is not a luxury, it’s a necessity.

A thought worth pondering: Whether there is inherent bias regarding whether or not it’s in the patient’s best interest to view and potentially interpret their own results, the fact remains that many patients will. The 21st Century Cures Act has made this a reality.

The debate is ongoing. Time to up our game.

And now to other news, My October PET/CT and my updated labs show continued stability. We are still not seeing any SUV uptake on PET imaging which is very good news and my tumor markers remain in the normal ranges with no change. I will however be getting a follow-up brain MRI on November 27 to check on possible irregularities. 

Also in October, a video was released by, “The Jackie Banana Foundation”, “EXON20 Group”, and “ICAN” of an interview I did with the wonderful Taylor Host. This is the inaugural Patient Perspectives series debut that aims to benefit other lung cancer patients and their caregivers on the challenges of living with lung cancer and its treatments. Taylor and I had a lengthy discussion and I hope this shows the realities of living with a lung cancer diagnosis while highlighting the fact that none of us are alone.

       Last but not least – I’m observing my 8th Lung Cancer Awareness Month.

Happy Thanksgiving Everyone!