hjluks1This guest post, presenting the view point of Howard Luks ( @hjluks on Twitter). Howard is an orthopedic surgeon. He serves as the Chief of Sports Medicine, Arthroscopy and Knee Replacement at Westchester Medical Center, in Westchester County, NY.  Asked about participatory medicine and patient engagement, Howard told me “I am  infinitely intrigued by the possible uses for social media to improve the delivery, access and quality of health care to the patients I have the honor of treating everyday.” He raises a very important point about the variations among patients of their willingness to take charge and become engaged in their care.

I was so impressed by his blog post that I asked him for permission to republish his original post here.


here’s what people more typically do after a diagnosis: Gather up a hodgepodge of information—online and by talking to friends—that is often incomplete, inaccurate, and incomprehensible. “Generally speaking, the perception of chances of good and bad outcomes is very poor,” says Annette O’Connor, a researcher at the University of Ottawa in Canada who has long studied how best to get patients informed. A patient may think a treatment is going to cure him when it might only lessen symptoms, for example, or that the risks are more serious than they actually are. The Foundation for Informed Medical Decision Making (www.informedmedicaldecisions.org), a nonprofit patient advocacy group that is supporting the 12 centers, cites research showing that most people can’t answer even basic questions about their illnesses. Often, they simply defer to their physician. But doctors rarely give comprehensive information. Time is short, they often have biases—surgery and rehab for that torn ligament beats trying rest, exercise, or physical therapy, say—and many assume patients don’t want the burden of overwhelming information.

For now, the *standard* is Informed Consent. Basically your doctor tells you what is wrong, details the treatment recommendation and tells you the reasonably foreseeable risks, potential complications, etc. For decades, this has been the standard. The problem with this is that it does not take into account the variables introduced by each individual patient and their values.

I have talked about this previously on this blog… I call it the “personality” of an injury. Assume two people slip and fall in the snow and tear their ACL (a ligament in the knee). One person plays tennis 4 days a week, skis 20 times a season, and has no desire to curtail activities. One person is a couch potato, and is not involved in any activities involving cutting, pivoting or twisting (when you need the ACL). Who *needs* a new ACL reconstructed? Each injury might take on a different personality, depending on the needs, desires, and values of the patient. This, in essence, is what I review with each patient as we determine whether or not surgery is *necessary* for their condition. A shared decision making process will incorporate the values of the patient, after they have been informed of what their limitations might be with or without the surgery and whether or not the potential complications are *worth the risk* to them. On my website, there has been a section on shared decision making aides for the past 3 years. I have reviewed these aides with many patients (some still do not want to) and I find that these patients, if they choose surgery are much *happier*. They understand the process, the procedure, the risks and the reasonable expectations…. and THEY made the decision to proceed after WE went through a thorough shared decision making process. Yes, it takes more time… so what, it was worth every minute.

The participatory medicine crowd and the social media savvy patient may not understand this— but many patients still do not want to know anything about their condition…. “…just do what you think is right doc…” is not an uncommon utterance during a discussion about the options available. I have discussed this as well. When you (as the physician) believe in incorporating patient centric values and the shared decision making process into the treatment algorithm this makes you feel uncomfortable… but at least it was the patient’s choice to proceed in such a manner.

Patients and physicians need to engage with one another as a team—incorporate these shared decision making principles— and in the end the patient has made the choice that *feels* right.