Gabriel Miller; Richard Schilsky, MD


June 25, 2014

Medscape: Some studies have suggested that the culture of medicine may be an obstacle to increasing patients' engagement in their care. How will increased engagement by patients in their care affect the way oncologists, and physicians more broadly, treat them? How will physicians have to adapt?

Dr. Schilsky: I think time will tell. Of course, every patient is different, and every patient is different in terms of the way in which they are prepared to deal with this kind of information. I think there is a real risk for too much information. Simply because patients are not doctors, there is no expectation that they will have the same knowledge and insights that doctors have. Therefore, when you see a lab result with a star next to it because it's outside the normal range, you don't know whether to panic or whether to ignore it, which is something that presumably your doctor does know. So there are those kinds of issues, and I think the greater engagement of patients in their own healthcare, to some extent, also puts great demand on the healthcare team to both communicate and educate patients.

At the end of the day, I personally think that the better-informed patient is going to be a much better participant and advocate in their own healthcare than someone who has no clue what's going on and doesn't even know what questions to ask. Doctors these days are spending a lot of time communicating with patients via email. In many ways, that improves the efficiency of their care because, first of all, you can respond to an email at your convenience, as long as you respond. You don't have to drop everything to answer a phone call. More importantly, you can respond relatively quickly to a question from a patient that will put their mind at rest, save them a lot of anxiety, save them a trip to the doctor's office, and therefore save them money. But it also saves you time and allows you as the doctor to focus on the patients who really do need your attention at that particular moment.

My sense is -- and again, I don't have any data to back this up -- that this is going to be one of those culture shifts. Like so many culture shifts, it will be more easily accepted by younger physicians and more difficult to accept by older physicians. As the generations change, as the older physicians retire, I think this kind of engagement with patients is going to be easily accepted by the younger generation. Look, you're talking about doctors in the future who've grown up on Facebook, grown up on Twitter, grown up on computers, text messaging. They're not going to think twice about responding to an email or a text message from a patient because that's the culture they're used to.

Medscape: The case is also often made that patients don't have the health literacy to truly understand their medical conditions or the complexity of healthcare decision-making. Is this a valid argument?

Dr. Schilsky: On one level it's a valid argument, in the sense that you can't necessarily expect patients to interpret medical data; even the most well-educated layperson doesn't have the medical education to do it. On the other hand, every patient, every person, knows what's important to them because everyone has some insight into their preferences and their values and how they're feeling each day. I think the issue of health literacy is like so many of these things -- highly nuanced.

If you hold people to the expectation that the average person who's got a high school education or 1 or 2 years of college is going to be able to interpret a complex laboratory report or read a CT scan, it's foolish to even think about that. But you can educate somebody to, say, know that if they develop a new pain they should call you, or if they develop a fever they should be in touch, or they can expect that their hair is going to fall out, so they shouldn't worry about that when it happens. The point is that it's all about focusing on the issues of health and illness where the patients themselves are the experts.

We're not expecting the patients to have the expertise of the doctors. But the patients have a lot of expertise about themselves. I think that's really what the issue is. The patient should be encouraged to convey that information to their healthcare teams.


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