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Paying Lipservice to Patient Engagement

Health Affairs held a briefing this week in Washington, D.C. focused on the content of the magazine's February 2013 edition, New Era of Patient Engagement. The briefing boasted a notable list of policy wonks as speakers including Howard Koh, Assistant Secretary for Health, US Department of Health and Human Services; David Colby, Vice President of Public Policy, Robert Wood Johnson Foundation; and Joe Selby, Executive Director, Patient-Centered Outcomes Research Institute. Yet no one on the panel bore the simple title of ePatient.

The event's twitter stream (tagged #HA_Patients) hit a few highlights, and a podcast was released after the briefing. These tech alternatives to actually reading the HA edition will have to suffice for most patients due to an all too common problem—journal access. In the medical and academic journal market, one must pay to read. An individual subscription to HA, delivered online, is $143 per year. A print subscription is $158, and the Premium subscription that includes online, print, and mobile versions comes in at $178. In comparison, the New England Journal of Medicine (NEJM) costs $169 each year for a print, online, and iPad subscription and $139 for the digital only edition. The American Medical Association's journal (JAMA) is $125 a year, online only, and $185 for print for those who are in an "other" profession such as being a patient. I can't help but think of these prices in relation to other bills. To subscribe to HA, NEJM, and JAMA—digital only—would cost $407 a year, which, given my insurance, would be the equivalent of 40 generic copays, 16 trips to the primary care doc, or 8 trips to the neurologist. For a patient to subscribe to the journals of record simply isn't practical.

So then how can patients be expected to participate in their own healthcare, to engage in improving the healthcare system as a whole, if the majority of the medical establishment continues to shut patients out of the dialogue? To my fellow patients I say, "They are talking about us, but they are not talking with us."

The Society for Participatory Medicine featured in 2011 an article on the Patient Activation Measure—a title that sounds suspiciously like a robot's start up sequence—which is a method for assessing how activated a patient is and how to use that information to improve outcomes. Developed by Dr. Judy Hibbard, who appeared on the HA briefing panel in Washington, PAM uses thirteen questions to ascertain the patient's engagement level such as "Taking an active role in my own health is the most important thing that affects my health," "I understand my health problems and what causes them," and "I am confident I can figure out solutions when new problems arise with my health." Patients are assigned an activation level of one through four. It's an interesting concept; however, there remains an element of what must be done TO patients rather than what can be done WITH patients.

Susan Dentzer, Editor-in-Chief of HA, opened the HA briefing with this statement: "Even though we're calling this the New Era of Patient Engagement, probably a better title would have been the New Era of Person Engagement because after all we all are people, we are either patients in the past, we have been patients, we are either patients now, or we will probably will be patients in the future, but we can certainly agree we are all people, so think of this also as the new era where we really try to get us as persons engaged in our healthcare."

I do not fully subscribe to the "we are all patients" mantra, yet I appreciate Dentzer's qualification that while patienthood may have not yet occurred, our personhood gives us a common bond. Patients are people. Providers are people. Even policy wonks are people. The problem is that being a person does not translate to being a patient the same way that being a patient translates to being a person. A person eats, sleeps, breathes. A patient has been on a liquid diet for days before surgery. A patient choses which position in which to sleep by that which causes the least pain. A patient measures lung capacity with a spirometer to ward off the onset of pneumonia brought on by bed rest and shallow breathing. A person who has battled at most a run-of-the-mill case of the flu, who has never had a bone broken, a wound stitched, an infection battled, an IV line blown, a catheter inserted—is not a patient. A person who has never spent more than an hour in thin and scratchy open-backed gown, has never had their urine and bowels examined and measured, has never awoken from anesthesia cold and shaky, has never cried in a parking lot due to relief or grief—is not a patient. A patient is a person, but a person is not a patient.

These people who claim ownership over the title of patient with the assumption that they will one day become a patient do not know what that experience will entail and do not want it. We patients do not wish it upon them. Being a patient is hard. Being a patient who survives is harder, and one who thrives, the hardest yet. Pretending to understand what it means to be a patient without ever having been a patient belittles the enormous struggle that patients undergo, and it is an inexcusable affront for the medical system's leaders to continue to engage in conversations about patients without including patients. 

If we are to foster patient engagement, we must break down the silos of care and bring representatives from all the concerned parties into the discussion in order to attain true communication. Because patients do not know what it means to be an emergency room doctor. Patients do not know what it means to be a primary care physician, or a hospital administrator, or a medical device maker. Key players such as these play siloed roles that require narrow focus in order to be successful at the task at hand. In order for the emergency room doctor to be the best emergency room doctor he or she can be need not calculate the cost of waiting room furniture and time spent on bill collection while treating the patient. The device maker, in order to attain highest and best use, need not contemplate the best way to educate parents about vaccinations and childhood behaviors. These silos will remain—and the healthcare system remain unchanged—as long as we continue to talk at one another instead of with one another.

The healthcare systems that will change the way healthcare is delivered will not be those relying on models and methods and manipulation to coerce patient engagement—the systems that incorporate patients into the infrastructure of their design and management of each department will see the greatest measure of success. In order to engage patients, we must include patients. An included patient is a compliant patient. And including patients—the constituency providers serve—thereby engages providers to put caring back into healthcare and work in collaboration to achieve better outcomes. 


  1. Bang on post. Have been sharing all day. :)

  2. Nice post. Will have to cite and link you on my REC blog.

    "The healthcare systems that will change the way healthcare is delivered will not be those relying on models and methods and manipulation to coerce patient engagement—the systems that incorporate patients into the infrastructure of their design and management of each department will see the greatest measure of success. In order to engage patients, we must include patients."

    Yeah. See the Weeds' "Medicine in Denial" --

    "Patient autonomy does not mean that patients may choose whatever medical
    care they wish without regard to cost or medical necessity. Patients, providers, and third party payers should not be able to impose medical or financial decisions on each other unilaterally. Checks and balances are needed, including a system for adjudicating disputes. But the standards for adjudication must recognize the patient’s central role. Deference to patient judgment, as distinguished from the judgments of providers or third parties, will lead to more rational decisions. For patients, unlike providers, medical care is an unfortunate necessity, not a source of income and not a career interest to pursue. The patient’s incentive is to obtain the best care but no more." [pp 225-226]

  3. Brilliant overview here - thanks so much for this. You hit the nail on the head when you wrote: "The healthcare systems that will change the way healthcare is delivered will not be those relying on models and methods and manipulation to coerce patient engagement."

    I observed many examples of those models and methods among some of the happy hypemeisters of tech startups I met at Medicine X last fall, summed up beautifully by Dr. Danny Sands who tweeted at the time:

    "Why so many services and apps for the 1%? The users of so many of these products are not the same as real patients I care for."

    Here's another example: in one of my recent women's heart health presentation audiences sat an older women, beautifully dressed, beautifully done hair, beautiful manicure (funny what you notice about your audience members sitting in the front row!) At the end of my talk, she raised one (beautifully manicured) hand and asked:

    "My doctor says I have a 'heart rhythm problem' - what does that mean?"

    She is the type of patient (and I'm guessing very similar to others in her demographic - like my own mother) who sits and smiles and nods during the doctor's explanation of her diagnosis and treatment plan - all the while feeling too embarrassed to interrupt by saying: "What do you mean?" I'm also guessing that her doctor has absolutely no clue that his patient is utterly ignorant of her own diagnosis - despite whatever explanation he may have appropriately offered at the time.

    She is also an example of why I hold out little realistic hope for PAM's 13-point self-reporting questionnaire in which patients might be too embarrassed to truthfully answer questions (like: "Taking an active role in my own health is the most important thing that affects my health") with a NO response.


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