When Online Information Is the 'Third Party in the Exam Room'

H. Jack West, MD; Sumanta Pal, MD; Timothy Gilligan, MD


June 14, 2018

H. Jack West, MD: Hello. I'm Dr Jack West, medical director of the thoracic oncology program at Swedish Cancer Institute in Seattle. Welcome to Medscape Oncology Insights. Joining me today are Dr Sumanta (Monty) Pal, co-director of the kidney cancer program at City of Hope, and Dr Timothy Gilligan, vice chair for education and associate professor at the Cleveland Clinic Taussig Cancer Institute. Thanks so much for joining me.

Along with immunotherapy and targeted therapy, the changing role of the patient has really changed how we practice medicine. Specifically, patients are more educated and empowered in finding information online. There are some very good aspects and challenging aspects to that, especially in an era where so much new information is coming out. We are specialized in one or two kinds of cancer compared with a general oncologist, who may see 15 different kinds of cancer in the course of a day. It is extremely difficult to keep up. Meanwhile, patients who have a specific mutation may focus on learning about it for hours a day, and that is something that is just not realistic for a doc in practice, certainly not a general oncologist.

Online Information and the Doctor-Patient Relationship

West: Tim, what are your thoughts on the role of the "third party" in the room? With everything available online, whether live patient groups or online discussion forums, how does that change the dynamic between the doctor and the patient?

Timothy Gilligan, MD: This is an important point. The rate at which knowledge is coming out obviously is so much faster now. Keeping up with everything is much harder, and patients can focus on just that one thing and come in with information that you have not heard about yet. Even as a specialist, I've had that happen to me in the diseases I treat. I think that, very much, medicine is moving towards a model of partnership between patients and physicians. In some ways this can help. The patient can be more of a partner in their own care, be more active, and maybe actually find something that is relevant.

I was talking to a colleague recently who is an internist, whose wife had been diagnosed with Hodgkin lymphoma. He wanted to help his wife, so he read everything he could about it and he found new data that she could have fewer cycles of ABVD (doxorubicin/bleomycin/vinblastine/dacarbazine). He went to the oncologist and said, "I’ve been looking at all of these studies and it looks like maybe we don't need to give so many cycles." The oncologist agreed and she got fewer cycles. What was striking to me was that the husband felt so good about this. He was a doctor, not a lay person, so he brought more expertise. But for him, it was the way he could participate. He had not overruled the doctor or talked him into something, but brought something to his attention that maybe was new or that he had not seen yet.

I want my patient actively involved in their care and treatment plan. I want them to adhere to whatever plan we agreed to, and I think they are more likely to do that if I treat them with respect as a partner. They may bring me something I do not agree with—people do bring me crazy stuff, but I can't say that it's crazy stuff. If I treat them with respect, listen, and then share my perspective, I feel that we can work together as a team, and that provides better care for the patient.

West: It certainly can get greater engagement and buy-in. We have changed a lot over the past few decades, from the doc telling the patient what to do and a more paternalistic model than nowadays, where we try to come at it together, even potentially saying, "Here's what you came in with and here is what I know. Let's talk about it and come up with a plan together."

Monty, what are your thoughts? Do patients coming in with the various genitourinary (GU) malignancies like kidney or prostate cancer bring you information from the outside?

Sumanta Pal, MD: Absolutely, and everything Tim said resonates with my own practice. I've adopted one practice of late. With several of my very well-informed patients, I've suggested—and many have done so without my suggestion—that they join some of the Twitter groups around the conversations we are having. I'll give you an example. At this year's American Society of Clinical Oncology (ASCO) meeting, we are talking a lot about whether we should remove the kidney in patients with metastatic kidney cancer—a huge topic for us right now. Experts are duking it out online with very objective polls. You can actually log on to Twitter and see what the experts think about whether you should have this procedure. In some respects, I find this to be like going out and getting a whole series of second opinions. Patients will know what I'm suggesting and I'll know what other experts around the country—who I trust, by and large—are suggesting as well.

It used to be that docs talk with docs and patients talk with patients and almost never the twain shall meet.

Blurring of Barriers

West: It's interesting how on Twitter and some other online settings, the barriers between doc communities and patient communities are being blurred or even coming down. It used to be that docs talk with docs and patients talk with patients and almost never the twain shall meet. But that is not happening as much. Increasingly at ASCO and other large cancer meetings, patients are part of these discussions and meetings. Patients are following along and becoming increasingly educated. More than a decade ago, I started the nonprofit Global Resource for Advancing Cancer Education (GRACE), to disseminate high-quality patient information to patients and caregivers all over the world. The idea was that if people are going to be looking for information online, we can help ourselves by sharing high-quality information to dilute out some of the poor-quality information that people may stumble onto that we are less enthused about.

Power of Patient Groups

West: Have patient groups in the GU setting been aggregating enough to potentially facilitate research? From the thoracic oncology perspective, there are increasing numbers of patient online groups with rare mutations, such as subgroups with the EGFR mutations, ALK rearrangements, ROS1 mutations, and even exon 20 insertions. These 1% populations are finding each other online, sharing information about clinical trials, and as a group saying, "If a company with a novel agent can make this trial available, we'll get you dozens of patients in a short time." I think this changes the value proposition and lowers the bar for studying what would otherwise be potentially prohibitively rare populations. Is that happening yet in any other settings that you know about?

Pal: I am seeing it, to some extent. In kidney cancer there is a group called KCCure (Kidney Cancer Research Alliance). This group of individuals is very interested in understanding patient-related questions that emerge as clinical data are presented. One great example of this is adjuvant therapy for kidney cancer. One mistake we make as investigators is that we try to put ourselves in our patient's shoes to understand what they would want. We make assumptions, like disease-free survival is not important and the only thing that matters is overall survival. To their credit, KCCure has formally studied this; one of my fellows is presenting their data here at this meeting. Based on survey results, we found that our suggestions and expectations of what patients want differ very substantially from what patients truly want.

Gilligan: The prostate cancer community is certainly very organized, but not as much on the mutations because we don't have as many targets. I definitely have patients coming in who have talked to other men with prostate cancer, and they have heard about the BRCA mutation story and PARP inhibitors. Honestly, this was first brought to my attention by patients very early on. A number of my patients follow the literature on prostate cancer because there is so much of it. That has been useful, but I would emphasize what you said before, which is that there is good information and garbage information out there. When we can point them to higher-quality websites, we serve them better.

West: Whether it's through ASCO, GRACE, or other sources, we need to ensure that there are good places for people to go to so that they are getting the most credible information as an alternative to more dubious information. We will turn to the potential challenges in the next discussion. It's interesting that what we are seeing is a real change in how docs have to interface [with patients] and that they just cannot know it all anymore. Even as specialists, we are having patients come to us with things we don't know. It is certainly a change in the mindset for the general oncologist that they no longer can realistically hope or expect to be on top of everything out there, and it's not a shortcoming to not know every detail of all treatment options for every 1% subpopulation.

Monty, Tim, thanks so much for joining me today. It's been a great discussion. And thank you, the audience, for joining us. This is Jack West for Medscape. I look forward to our next discussion.


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