Feb 26 2012

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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  1. Pat Mastors

    Spot-on, Trisha. I’m hopeful your post reaches the audience it needs to.

  2. Kait Roe

    hey all, sorry I’m a little late to this coversation. but here’s my two cents for what it’s worth. Empanelling a cadre of speakers to discuss patient centeredness and patient engagement without a patient on it is absolutely as mindblowingly tone deaf as the GOP putting together a panel of testimony about women’s health without including a woman in the conversation.

    nuff said.

  3. Kate Murphy

    In answer to the PCORI concerns:

    How do you ensure that ANY panel member, professional or patient, will stick to the “rules of engagement” and make appropriate and productive results? You don’t. Any panel takes risks that some participants will be duds — and too often some are.

    The comment reflects the bias that pros somehow are more reliable than patients, that patients will go off the rails and ruin everything.

    That has never been my experience. Very often after I speak as part of a panel, I get special thanks from the audience for my point of view and contributions. I don’t pretend to be an expert, but I do tell a patient story that puts a different perspective on things.

    Howmdo you find people who represent the views of many patients, not just their own? Read blogs, read the news, look to patient advocacy organizations asking for patients who are advocates working with them.

    The patient advocacy movement is growing. Our voices are being sought. And there is power in what we have to say.

  4. Eve Harris

    Donna and Ted speak for me. Indeed, “some (people) are more patient-y than others!” LOL

    But I need to emphasize that this matters in some contexts more than others, and that transparency is of course crucial.

    It matters when: Trisha wrote that it’s a problem “when non-industry-insider patients are expected to be the representatives of a non-medical-industry-insider’s point of view” – I think she meant “when *insider* patients are presented as if they can represent non-insiders’ point of view…” That situation calls for greater transparency.

    But I’m also thinking today of my friend with cancer: a physician whose chemo was no less toxic because of it. Whose bills will be no less confusing; whose lab results will still require the scrutiny of another pair of eyes.

    That physician is a patient – and now a survivor.

  5. Erratus


    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)

  1. PCORI National Patient and Stakeholder Dialogue | DCPatient

    […] One early observation was that there was no patient panel.  A distinction between consumers/public, patients, and patient advocacy organizations was made several times and hopefully will be better reflected in future meetings.  While I understand the concerns with selecting patient speakers for a panel, rather than comment – how do you select a few to represent many?  How do you ensure that patients stick to the rules of engagement for the meeting and provide remarks that are appropriate and productive? – if PCORI which is specifically tasked with engaging patients at every level won’t make the effort to construct a patients’ panel how can we expect any other meeting organizer.  @trishatorrey wrote a great recent blog post borne of her frustrations with this issue.  http://trishatorrey.com/2012/02/26/who-really-is-a-patient-skewed-opinions-result-from-inside-inform… […]

  2. Who Really Is a Patient ? | HealthMedWatch

    […] Patient’s Advocate website an interesting discussion ensued the other day with a post entitled Who’s Really a Patient? Skewed Opinions Result from Inside Information. The […]

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