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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  1. sue robins

    Great post. I recently sat on a patient panel at an International conference – and all the other ‘patients’ on the panel were people who were Executive Directors or Presidents of Patient Organizations. Now, I’m happy to speak with anybody on a panel, but calling it a ‘patient’ panel with ‘patient’ representatives was a bit misleading.

    I often wonder if we are heading towards the ‘over-professionalization’ of the patient voice?

    I worry this will make us lose the heart of the authentic patient voice.

  2. Jonathan Wald

    Great post.

    I think of “expert patients” and “non-expert patients”. And… formal training vs. trial-by-fire. Maybe…. “trained patients” vs. “untrained patients”?

    It’s true that doctors, nurses, and many others are incredibly well-connected, knowledgeable, experienced, with giant advantages in accessing care and (hopefully) avoiding barriers or mishaps – – compared to patients without formal training. It’s not the same as just being educated… since over 50% or Americans have “limited health literacy”, including MANY with PHDs and other advanced degrees. Also, even expert patients with formal training are learning all the time – about new medical treatments, new insurance policies, new technologies, new internet resources, etc.

    Without formal training, people have to dive in and learn about navigating serious health issues and piece together fragmented health experiences “on the fly” – – trying in a panic to develop knowledge and experience without the benefit of formal training as an EMT, nurse, physician, etc. I think the goal, whether you start with training or not, is to function like you have an advanced degree – – – in being an empowered engaged….. e-patient!


  3. Kate Murphy

    I too often see situations where patient advocates have been chosen who are doctors or sometimes nurses who have had an illness, as many have. I think the problem is that the healthcare system doesn’t really have personal relationships with non-medical patients. They don’t know where to find spokespeople who are simply consumers of health care.

    Unfortunately, this misses the point of the ordinary and usual patient voice and patient concerns.

    Sure we all are patients at some time in our lives — but it is the experience of patients with care at a particular time and particular setting that provides the best information about how to make those settings better.

  4. Joleen Chambers

    I am a patient advocate whose voice has been suppressed intentionally & systematically by both the FDA and one of the largest and most profitable “patient-centered” medical institutions in the nation. The #1 expenditure of Medicare is joint replacement. According to the Institute of Medicine report 7/29/11, the FDA 510(k) clearance method is legislatively flawed and should be scrapped because implanted devices are coming to market without clinical testing or post-market registry, imperiling public health & funding. FDA administrators, politicians and medical device executives are defending the status quo/profit center. There is no patient voice and as a result patients are all relegated to being silent lambs or guinea pigs. Take your pick. I welcome invitations to speak and participate.

  5. DCpatient

    Trisha, I wrote one of my earliest blog posts on this issue. http://www.dcpatient.us/2010/11/consumers-v-patients/
    You and the earlier commenters made raised several distinct issues:
    1. The “we are all patient” people are often well meaning, but miss what truly constitutes the patient experience. My response is usually, “perhaps, but some of us are more patient-y than others”
    2. The difference between a patient and a leader of a patient advocacy organization — patient advocacy organizations are more often head by those expert in managing associations, not experts in that disease state’s patient experience
    3. The insider vs. non insider — I think needs to be considered on a case by case basis. Physicians can get crappy care too can become powerful patient advocates after having been frustrated on behalf of themselves or their family members
    4. trained vs. non-trained — I think this is often the real issue in not getting patients included, invited. Some have had bad experiencing with patients unable to transcend their own experience to be able to participate constructively to the event/committee, etc.

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  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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