I gave a talk recently to a group of my peers about addressing the needs of patients after a diagnosis of cancer, emphasizing points where transitions occur—from treatment, to end of therapy, surveillance, recurrence, and extending all the way up to the end of life—and how important it is to consider the entire journey of a person with cancer, from patient to survivor.
One of my goals of this talk was to address the need for oncologists to engage those actually diagnosed with cancer, the most interested of the “stakeholders.” I asked my colleagues if they had heard of a movement afoot in medicine, that of patient engagement, and whether they knew of folks like David deBronkart (alias e-Patient Dave). I was met with a few nods, but mostly none had heard of either. In truth, I was surprised to see that the patient engagement movement had not achieved greater familiarity with my audience.
On Google, the term “patient engagement” brings up over 48 million hits. There are even organizations that aim to spur on this evolution in medical care, such as the Society of Participatory Medicine and the Center for Advancing Health. Patients who are engaged are often termed “e-patients.” They have turned to the Internet to learn about their afflictions, read up on biology, treatments available, etc. They are interested in determining for themselves where to go for the best care, including what treatments are undergoing investigation. Indeed, they are demanding better care, and a more active role in their own treatment, as well as for those they love and advocate for.
The “awakening” of the e-patient has been tied to the seriousness of the medical condition one has been diagnosed with. As described in the e-patient white paper, when one develops a more severe medical condition, they are more likely to adopt a higher level of medical knowledge enabling a more competent and in control persona, which is associated with greater assertiveness and autonomy with medical providers. Indeed, anyone on social media is well aware of the on-line communities where peer-to-peer sharing of information and emotional support is ongoing on a weekly basis (shout-out to #bcsm).
These characteristics describe the patients I am seeing in the context of a routine clinical visit. More and more often, patients are coming in with fairly sophisticated questions about their pathology, treatment regimens, and clinical trial options. I have found myself rendering treatment recommendations only after I’ve sat with a newly diagnosed patient for some time discussing (and yes, even debating) the data. I have also come to appreciate that an evidence-based approach to many cancers must take into account the individual and that her preferences and goals are as important as the results from the randomized clinical trials we hold as the gold standards. Not only do I appreciate these conversations, I have come to anticipate them.
Unfortunately, this is not a universal experience. During a healthcare leader (#hcldr) tweetchat in December, I exchanged tweets around the topic of patient engagement. Specifically, we had exchanged thoughts about patients presenting to their clinicians with new information they wished to discuss and how some advocates are keen to teach others about approaching their doctors with data:
And then this tweet came in:
Unfortunately, medicine today has been slow to evolve; the experience of Mr. Van Houten is one shared by many involved on social media, and it is one that I believe is going to need to change. We can start by getting more involved in the information our patients and their families are accessing and to do so calls us to think and interact beyond the confines of the examination room. Although patients are accessing the web for health information, there is a deep skepticism about what they are accessing. For our patients, this was shown in the Health Information National Trends Study (HINTS), in which although over 50% of patients turned to the Internet first for cancer-related information, the proportion of those who trust the information they find is less than 20%. This points to the tremendous need for better and more accurate information; a need that we must fulfill.
Fortunately, there are venues where we can make a difference. Specifically, I applaud ASCO’s site, www.cancer.net, for filling that gap where patients can access timely information. Coupled with the active social media groups on-line, like #gyncsm (for gynecologic cancers), #bcsm (for breast cancers), and #lcsm (for lung cancers), there is a great capacity to make a difference. What it needs is the presence of the experts- those clinicians who can speak from their own experience, who understand the data, and can educate an audience far beyond their local practices. This is the opportunity present for education at a massive scale, which may yet translate into a better use of the time when clinicians and patients are face to face (F2F).
And to Mr. VanHouten, I only had this to say:
Note: For more information on e-patients, please see Dr. Michael Thompson's post, "Online Patient Communities for the E-Patient: 'Betwixt and Between' a New Patient and an Expert."