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Keywords: Patient engagement, non-small cell lung cancer, physician-patient communication.
Citation: Wilkins S. Response to “evidence that engagement does make a difference. J Participat Med. 2010 Dec 31; 2:e24.
Published: December 31, 2010.

To the Editors:

In response to Jessie Gruman’s recent commentary, research in the area of patient engagement has actually been going on for at least 30 years; it just was not called patient engagement. Research in the field of physician-patient communication–a requisite mediator of engagement–has consistently demonstrated a strong, positive correlation between the quality of the doctor-patient dialog and such measures as clinical outcomes, patient and provider adherence, reduced utilization, and increased patient and provider satisfaction.

I addressed this very topic in a recent blog post entitled “Health Behavior vs. Doctor-Patient Communications–Are We Focused on Modifying the Wrong Thing?” at

Why do patients with non-small cell lung cancer (NSCLC) opt out of surgery as a treatment option? Having been there with my wife, who survived NSCLC, (Stage 4; re-staged to Stage 2 after chemo), I can offer several reasons based upon real-life experience: 1) Most thoracic surgeons in local community hospitals where lung cancers (and other cancers) are first diagnosed only “dabble” in lung resections for cancer. Their primary focus (ie, profit center) is on heart disease. If the consult my wife had in the San Francisco Bay Area is representative, many surgeons’ familiarity with current treatment and outcomes research is dated, as are their ensuing recommendations. As such they instill little comfort or confidence in patients who aren’t willing to die without a fight. 2) Too few survivors are willing to share their success stories (making a case for social media). Conventional wisdom is that, “lung cancer is a death sentence, so why undergo major surgery only to die anyway?” 3) There are better treatment options (as my wife and I discovered), such as radiation therapy and proton therapy. Again, poor physician-patient communications plays a huge role in patients’ decision making.

It should also be noted that not everyone is equally predisposed to “care” about their health, eg, people with an external locus of control. I have met and counseled many lung cancer patients who believed that it was their time to die, and nothing they could do would change the outcomes. The same notion applies to people with diabetes, heart disease, and so on.

Patient engagement initiatives, like advertising, have to be relevant to the patient if they are to work. By “relevant,” I mean they have to be congruent with the patient’s beliefs, attitudes, previous experience, and social context. Telling a person who lives in a “bad neighborhood” to go out and walk every day is not relevant. Providers projecting attitudes toward patients based upon their weight, gender, or race is incredibly obvious and off-putting to the patient.

I guess my point is that what the research has shown is that for engagement/communications to be effective, it has to be tailored to each individual patient to maximize relevance, cognitive engagement, and eventual behavior change.

Copyright: © 2010 Steve Wilkins. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author(s), with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.