Table 5 Clinician themes and illustrative quotes

Cancer is different

Much of what we deal with is sensitive information. Cancer is a very serious thing. It’s not just I’m going in for my cardiac score or whatever. (C2)

When I get labs drawn or get a note from my primary care physician, […] that is a totally different report than telling somebody, via a path report with no communication that, “Oh, by the way, your cancer’s back.” or, “Oh, by the way, your MRI of your brain shows that you have brain metastases.” Like it’s just the level of recording is just so so different. […] That’s what I would tell people is that you can’t take a primary care physician’s or provider’s results and assume that it’s going to be the same level of comfort or anxiety for somebody that is already anxious about what their cancer is going to do. (C5)

It’s a good idea in theory, but it’s not been applied practically. With so much of medicine, it needs a more deft hand than they’ve given it. And perhaps sharing with, listening to some frontline [oncology] clinicians, whether that be, inpatient clinicians or outpatient clinicians, specialties, or maybe some frontline clinicians and getting their take on the nuances of it would help. Rather than just a one size fits all [types of healthcare] type of policy. (C23)

I wish you would’ve checked with providers before it was instituted because I don’t think it’s appropriate in the oncology world that pathology results, that patients find out they have cancer from their electronically result before they talk to a provider. It may be appropriate in internal medicine or family practice type setting or endocrinology type setting, but I think it adds to the anxiety in a, and I can only speak from this, but maybe more of the sub-specialties in situations. (C18)

Instant release causing harm

I would say to them, for cancer patients, if you had a cancer and you got a test result that you weren’t expecting and you’re able to see your result, how would you feel if you read in a report that you have cancer and nobody’s prepped you or talk to you about it? What is the impact on your life? Because I feel like that would be shattering. I mean, it really would. It would be devastating to read in a report, oh, here you have cancer everywhere. You have cancer in your lungs, in your bones, in your brain, in your abdomen and you thought you had like a benign cyst, but no. So now you’re sitting and wondering and panicking because Dr. Google says all of these things, but nobody’s talked to you about what this result means. Nobody’s been able to go over it with you before you’ve read it and come to all these conclusions because where does your mind go automatically? This is the death sentence. (C29)

Well, I guess I understand where a patient owns their chart. Right? It’s their information. They should have access to their information. But some of the information should be seen by a doctor first, before releasing to the patient so that there are no misunderstandings. That’s what I think there’s no fear. I mean, there’s always going to be fear when you get a scan, but there’s no misinterpretation of results. […] That’s the biggest issue. And I think that’s, I don’t know. It’s kind of mean. It is. It’s kind of mean to do to them. (C12)

So I think the sentiment is good and I appreciate it, but I do think there is just so much sensitive, complicated medical information that unleashing that to people who are not capable of really understanding it could be quite dangerous and harmful. (C26)

I would say that there’s a reason we have physicians that go to school for 12 years and are able to read and figure out scans and labs and be able to embrace that for patient, if there’s bad news or. I think there’s a reason we see physicians is because they’re able to interpret that things. And I don’t think patients should get that [test results] first [before the physician]. It’s dangerous, especially if you were a new diagnosis. (C33)

I would say that the thought and intention behind it is great. I would take a step back and put yourself in a patient’s shoes, even being a nurse and getting my regular yearly labs done myself, it’s already anxiety-provoking and I know what the labs mean. And so, putting in yourself in a patient’s shoes that might not have any educational background at all, and then seeing lab results, biopsy results, everything like that, I think it can be anxiety-provoking, hard and sometimes can lead patients to have depression and sit on those results for some time before they’re able to talk to a provider. (C19)

Add Safeguards

My suggestion would just be certain things like imaging or surgical pathology would have more of a window or grace period for the physician to have an opportunity, to go over it before it was released. (C34)

I think that there is a lot of unnecessary harm that we are causing patients right now. With probably some tweaks to the system we could improve on. I think a delayed release of the labs, pathology scans, which would probably have to be across the board. (C2)

Increased stress and workload

I mean, I think initially it added more anxiety to all the providers, because I think people… I mean, as a provider, we’re nervous about what we’re going to get. Are we going to get barraged with phone calls all day long? (C11)

And then I think too, it is a very real thing that this additional stress has put a lot of even more burden and expectation on providers as a whole. And I know that we’re all, in this country, stressed out, but I am amazed at the number of colleagues who were maybe around retirement age, who are just like, “I’m out.” […] I definitely have a higher number of patient messages now. And it does add to my workload. And so it’s contributing more to physician burnout, provider burnout, I probably should just say, it’s everybody. I know that my nurse, for example, who was an amazing person, she even shortly after the CURES Act said, “For the first time ever, I am not enjoying my job as much now.” (C2)

And I think if I were on the patient side, I think it could be very helpful. I think though, that there are also definitely drawbacks and the freedom to look at your information at any given time is coming with some downsides, probably some, a lot of anxiety for patients and families, a lot of extra work for physicians who are trying to appease patients, explain things. (C26)

I feel like we should be transparent in getting our information to our patients and families. I don’t really have any negatives. I think it’s just working around how to be better about how to approach this now that it’s here. (C15)

But most physicians don’t ever want to change anything, even if it’s to their benefit, because they’re so used to whatever it is that they’re doing, that they’re rutted in that system and changing it in some ways it’s going to involve at least a short-term period of pain before things get better. (C9)