Last week I wrote about a new molecular marker in lung cancer called ROS1, which is just beginning to be studied in lung cancer and associated with promising responsiveness to XALKORI (crizotinib). What I didn’t mention in my post was that I learned about it from a discussion thread, started by a patient. While it’s not unusual for me to have a knowledgeable patient with prostate cancer (another cancer I see and treat frequently) bring a report from a meeting or a new article that sends me back to the computer to learn more about it, I don’t often get caught flat-footed about lung cancer, since I spend a lot of time reading, teaching, writing, and thinking about it. And yet, I’m sure this isn’t the last time I’m going to be a half-step behind an astute patient, even in a subject that is a major focus of my work.
What I also didn’t mention is that I felt a little humbled and defensive about that. This is despite the fact that my TEDx talk from earlier this year was centered on the theme that there has been such an explosion of new information (a very good thing) and such democratization of information via the internet (also a very good thing if consumers of the information – patients, caregivers, and docs alike – can distinguish between credible and dubious sources) that it’s clearly time to move from an old model of doctor as the wise filter of all medical information to a new model of physician and patient sharing information mutually. This new bidirectional model of information recognizes the value of patients providing information to their own physician, obtained from their own research and online communities like GRACE. I state in my talk that no doctor can know everything worth knowing about a topic and that this new, more open and bidirectional model provides the benefit of collective knowledge rather than the bottleneck of what individual doctor might happen to know.
So while it was a little humbling, I need to heed my own words and recognize that it’s not a shortcoming to learn new things from patients and caregivers rather than only from other experts – very good information can flow from many sources. My expectations need to change. But by the same token, it’s important for patients and caregivers to know that their doctor may not be as well versed about the newest molecular markers and investigational agents as they are. I focus on just a narrow subpopulation of cancer patients and can’t know all there is to know about that field; the general oncologists and other physicians treating a broad range of patients have an impossible task of trying to keep up with all that they need to know about a huge variety of increasingly complex topics.
The concept of the all-knowing physician was always a myth, even if it was far more believable in the era of Marcus Welby, when there was much less actual medical information in the world, compared to now (the show House, MD is laughably implausible and has a team of writers scouring the medical literature for obscure problems to cover that no one doctor would ever know about). Today, it’s time to recognize that the doctor may well know less about a specific issue than their patient focusing on it far more, but along with that, for patients and caregivers to no longer have the expectation that their doctor will invariably know more if they are really competent. If medical care is going to truly work as a collaborative effort, as I would argue it needs to, both patients and physicians need to get used to the growing importance of what the patient and caregiver will bring to the discussion.
I did hear from one doc who said that 90% of his patients are illiterate and that he would be thrilled to have patients more engaged in their care. I know that I and many other oncologists I work with are very gratified to know that their patients understand the anticipated benefit and risks of the management options, so that they can act as truly informed patients.
I welcome your thoughts here, particularly around the question of whether the doctors you’re working with feel threatened by patients taking a more active role in knowing about their options and asking about specific tests and treatments, or whether they welcome and encourage a mutual discussion. The model is changing, whether we’re comfortable with that or not.