Who’s Really a Patient? Skewed Opinions Result from Inside Information

That seems like a fairly simple question, don’t you think?  Who really is a patient? But the answer is actually more complex than you might realize.

Among the possibilities:

1.  anyone who has ever accessed medical care is a patient – which includes everyone, no matter what their relationship is to the healthcare system (so, for example, doctors would also be considered patients, as would any other provider, or even payers like insurance company employees, or pharma employees, etc.)

2.  anyone who has accessed medical care, but doesn’t have inside knowledge of the healthcare system, is a patient

By dictionary definition, the answer is #1: that anyone who ever accesses medical care is a patient.

But when it comes to defining a patient’s perspective, his or her point of view, then the answer is not so cut and dried.  In my (not so) humble opinion, a medical insider cannot possibly truly understand a non-insider patient’s point of view about their healthcare experience.

Here are some examples:

  • When a doctor, nurse or other provider finds troubling symptoms,  s/he doesn’t just make an appointment, then wait for days or weeks like the rest of us do before we see a doctor.  S/he calls a friend and gets in to see him or her right away.  So – what is that patient’s perspective?  Is the point of view going to be the same? No.
  • When an insurance company employee needs a medical test or payment for a claim, s/he knows from the inside how to get it taken care of.  Is that the same perspective as someone who struggles to get those services?  Is the point of view the same? No.
  • When an insider, who is getting paid under the table for prescribing certain medications or is rewarded by a medical device manufacturer for using that company’s devices (think artificial hips and knees, or spinal fusion material, etc), is asked about the cost of care, they can’t see it the same way as the patient who needs that new hip and doesn’t have insurance.  Do they have the same point of view about their needs?  No.
  • When a popular doctor has surgery in his own hospital, in a private room, where the nurses respond quickly to the call button (because he IS one of their favorite doctors!), and is then discharged with no infection, do you think his perspective can be nearly the same as a Medicaid patient treated in that same hospital?  Yet – they are both patients in that hospital.
  • When the director of the “National Cancer Awareness and Prevention” charitable organization, the majority of whose budget is underwritten by a handful of pharmaceutical companies, is asked to represent patients on a conference panel to discuss the development and cost of cancer drugs, how objective can her opinions be?  Does she dare step on those pharma company toes by saying what a ‘real’ patient might say?

The subject came up most recently when yet another large, influential healthcare organization decided to hold a “patient and caregiver” forum to discuss “patient-centeredness” – and yet, once again, there were no non-medical-care-industry patients included as expert speakers.  Seriously.

It also reminds me of the many times I have approached healthcare conference planners, offering my speaking abilities, representative of that important patient point of view… and they were not interested.

Their response?  “We are all patients.”  (See #1 above.)  But if what they are trying to do is help patients – well – wouldn’t it be a good idea to ask a patient who isn’t an insider to chime in? Evidently not. They only wanted speakers who were from their industries.

Put another way:  it would be like GM or Honda designing cars without ever asking the opinions of car buyers, or JCPenney only selling size 4 dresses because they never assessed gender or the sizes of their shoppers.  They would swiftly go out of business….  which, of course, doesn’t happen in healthcare because we “consumers” (I hate that word in healthcare) don’t vote with our feet.

I think we need a way to make the distinction. If we are all patients – then what can we do to distinguish between those who do, or don’t, have a “real” patient’s point of view?  Are we, as non-insiders, “pure” patients?  Or are we “unencumbered patients?”

Or, maybe we do the opposite, and use a term to describe those patients who are insiders.  Maybe we call them “industry patients” or “insider patients.”

Or – maybe I’m missing the boat entirely….

This matters. It matters because when non-industry-insider patients are expected to be the representatives of a non-medical-industry-insider’s point of view, that point of view, and the results, get skewed.

And for us patients who don’t live inside the medical industry:
Skewed = Screwed …  In more ways than we can count.

What do you think?  Do you see the distinction?  While we may all access medical care, do you agree that our points of view are different?  What do you suggest we do to help the medical care industry understand and embrace the difference?

Please provide your 2 cents below.


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The Myth of “Doctors Are Patients, Too”


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Posted in: Doctor Communication, Health /Medical Consumerism, Healthcare Quality, Patient Empowerment, Patient Tools, Politics and Medicine, Self Help

Leave a Comment (18) ↓


  1. Erratus February 28, 2012


    You make some wonderfully astute points and, of the many health care sites supposedly geared to patients (a/k/a “consumers”) of health care, I would argue yours is among the best. I am one of those who works in the health insurance area and I could not agree with you more about the absence of REAL patient voices in discussions about “patient centeredness” or “consumer-driven health care” or whatever euphemism one wants to throw into the waters. Insurance is more complicated than ever (and it isn’t merely due to “gov’t [over]regulation”, or greedy health care providers or greedy Pharma et al). EVERYONE must be part of that discussion and empaneling experts only about patient involvement is akin to taking a patient history without a patient!

    Another problem I think we see all too often is the PR spin by patient organizations who tout that they are “listening” or they “truly care” about their patients, etc. Yet, we almost never hear from these same organizations about WHAT they have done to reflect their concern and care for the patient population. Certainly, in the company where I work, I cannot recall any widely discussed instances where we, as a company, failed to address our patients’ interests and turned that failure into a teachable moment. Rather, we get the PR spin about the letters of PRAISE we receive from members or providers as “rah rah” moments. Certainly, some of the praise is deserved, but we really should also hear the other side so we better understand the patient experience in our interactions.

    In addition to the PR spin above, the near vilification of regulatory agencies by many within health care / insurance organizations. Despite the fact that regulations were put in place not just to be a pain in the a** but rather, were implemented in response to abuses or neglect either in patient care OR in the commerce of patient care. It would do us ALL good to consider ALL of the working pieces and take ownership of our own failures and/or inadequacies in making the health care sector function more effectively, efficiently and AFFORDABLY. To do otherwise is automatically a disservice to and failure of service and care for patients at every level.

    (Thanks for allowing my rant – I look forward to exploring more of this site and will certainly recommend it to others)

  2. Kathy Day March 4, 2012

    I’m a patient. I’m also an RN, a mother/daughter/sister/aunt/niece, etc, a daughter of a Hospital Acquired MRSA victim, a patient safety and MRSA activist. I fit into many slots and so do all patients. When I needed cancer surgery at Christmas time, I kicked into “empowered patient” mode and used a lot of sage advice from fellow activists/advocates. Then I wrote a letter to my healthcare team, at the Hospital that I carefully chose to care for me. Some say I got “special care” because I wrote that letter. If I did, that is great. But, I think most patients have the smarts and the potential to become empowered and thereby safer patients. So, now I am not only a safer patient, I am a cancer surgery survivor and I had a totally uncomplicated recovery. Each and every one of us will likely become a patient some day. And THAT is a real and huge eye opening experience.