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The “token” patient

Being patient-centered is all the rage.

Healthcare organizations make a big deal about having “patient involvement;”

We have an entire center focused on patient-centered outcomes;

We see federal agencies releasing reports on patient-centered care and empowerment; and,

We even have opportunities for patients to participate in the FDA’s regulatory process.

We have had attempts to define and describe “patient-centered.” From one NEJM article:

“Patient-centered medicine is the newest salvo in these ancient debates. As a form of practice, it seeks to focus medical attention on the individual patient’s needs and concerns, rather than the doctor’s. As a rhetorical slogan, it stakes a position in contrast to which everything else is both doctor-centered and suspect on ethical, economic, organizational, and metaphoric grounds.”

But regardless of how we may define patient-centered and regardless of the many new opportunities for patient involvement, there appears to be a disturbing trend emerging in healthcare around “patient-centered,” “patient involvement,” and “patient participation.” This trend is that while patients are often invited to sit at the table (some may say more now than ever before), sometimes their voices are not even allowed to be heard; sometimes, it looks like the patient is there only for the appearance and not for the expertise.

We cannot let this happen.

Regina Holliday has written eloquently about her experience with this issue. On the opening webinar for the Patient and Family Engagement (PFE) Network of the Partnership for Patients (PfP), Regina describes “blowing a gasket:”

“Had anyone even apologized for this meeting involving patients occurring almost 1 year after the kick off session? You might have done that in the first ten minute while you kept me on hold.  In a call that is supposed to be a collaboration of patients, you have let us speak all of 15 minutes and I am including my video interview into that amount of time.  There are people on this call feeling marginalized and managed, and I know that because I am getting email messages from them right now.  You want to know how to engage with us?  Grab the domain name Partnership With Patients right now, I just checked it is available.”

Regina recognized the “token” aspect of the patient being included and asked for action.

We cannot let patients continue to be invited to the table and then ignore them.

We cannot think that we espouse patient-centeredness just because we have a patient who may attend our meetings.

Have you been a “token” patient before? Have you found yourself in a meeting where it is all about the “patient” but when you offer up your experience or your recommendations, they are ignored or dismissed? What positive experiences have you had as a patient being included in a decision making process?

I argue that if we want a healthcare system where it is about “we” and not about “I,” this must stop. Here at OH, Joel High has written extensively on the topic of patient-centered care and offers several ways we can be more focused on what really matters. This is such an important issue that it should drive how we approach all that we do in healthcare. After all, it is the stories that matter and the stories that drive change.

Let’s not allow patients to be at the table but relegated to the sideline. If we truly want to create a patient-centered healthcare system shouldn’t we start with the patient? But let’s not stop at just inclusion, let’s allow for the patient to be on the team in a meaningful way.

I leave you with the words of former CMS administrator, Dr. Don Berwick:

Be seen AND heard.