Are physicians ready for the e-patient movement?

Are physicians ready for the e patient movement?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,, 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:

Don S. Dizon is an oncologist who blogs at ASCO Connection, where this post originally appeared.

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  • Dike Drummond MD

    The patient has ALWAYS deserved a central role in their treatment plan. That can’t happen in the old paradigm of “the physician gives orders and the patient is expected to comply”. It is vitally important that we recognize our role as curators in this day and age. Our patients will come in prepped by Google .. ESPECIALLY if they have a life threatening illness.

    We interpret, advise, give evidence based advice and then DO NOT GIVE ORDERS. The key to patient centered care and not working so darn hard is to continue to ask questions as you co-create the treatment plan. You must enroll the patient in their plan before they will engage in the actions required.

    Here is a blog post on this missing step in Patient Centered Care:

    They must know What’s In It For Me (WIIFM) and say yes to a plan you create together. They do not follow orders. Never have and certainly will not do so going forward.

    The ePatient is for real and it is a GOOD THING.

    My two cents,

    Dike Drummond MD

  • Leslie Kernisan, MD

    I’ve had similar experiences when I bring up e-patients to my academia colleagues in geriatrics. We need to find a way to make sure clinicians become more familiar with the terms “e-patients” and participtory medicine.

    I have mixed feelings about referring to engaged patients…it’s vague as to what they are engaged with (their health? the healthcare system) & who is driving that engagement (patient driven? or provider driven). Patient engagement is praised when a provider just gets people to check the portal to schedule appointments. Whereas participatory medicine should be much more: it should be an effective collaboration between patients & clinicians, that helps this team moved towards mutually agreed upon goals.

    Thanks for the post; glad you are helping our fellow clinicians learn about e-patients.

    • drdondizon

      So great to hear your thoughts on this, Dr. Kernisan. I agree clarity is needed when we talk amongst clinicians about patient engagement. Med-speak lends itself to multiple meanings, and this is no exception. Your thoughts on what is “praiseworthy” in patient engagement got me thinking about the days to come when the metrics of engagement become a component of quality ratings. I would only hope that any attempt to do be meaningful (getting people to schedule appointments through a portal doesnt seem to cut it in my opinion). Deciding on “what is meaningful” will have to start by asking our patients to define this.
      To the larger point, I do agree with you- engagement should lead towards a participatory and collaborative clinician-patient relationship. It is a point I try to make with my colleagues — and to patients as well. DSD

  • ninguem

    Oh sure.

    I have a bad case of HTTP 404 and no one has been able to help me.

    Mrs. Ninguem has suggested a reboot.

    What do you think, left or right foot?

  • southerndoc1

    If some patients are e-patients, that means that others are non-e-patients. Do we have to develop different treatment strategies based on the label, or are these divisions just silly and arbitrary?

    Why not treat every one as an i(ndividual)-patient?

    • drdondizon

      Hi southerndoc1. I dont know any clinicians who look at any one particular patient and says with either a negative or positive connotation, “She is an ePatient”. So, as far as labels are concerned, I haven’t yet seen this and I hope I don’t.

      Perhaps the label has not made it to the clinic is because, more often than I’d like to admit, some clinicians still aren’t comfortable when patients bring data, papers, or other studies for discussion at appointments. Instead of referring to them as ePatients, they are labelled as “difficult” or “challenging”.

      Yet, the concept of the ePatient is an important one for us as clinicians to understand- if anything, it is to realize that information We need to accomodate this new era of health communicaiton and see that the “difficult” patient is actually aiming to better understand her health, treatment options, and wants to collaborate on treatments with us. This is at the heart of engagement (and hence, participatory medicine). As my colleagues and I wrote about in the British Medical Journal last year, “the assumption that some patients are not able or do not want to participate [in decision making] is inconsistent with both the evidence and contemporary models of care”.

      While all patients will vary to the degree by which they seek involvement, it becomes important that clinicians do exactly as you suggest- treat every one patient as an individual, and adapt their approach to each person’s level of engagement.

      Our paper in BMJ: Politi MC, et al. BMJ 2013 Dec 2; 347:f7066.

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