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.

…MORE…

Patients – The Invisible Stakeholders

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) ↓

4 Comments

  1. Ted Eytan February 27, 2012

    Dear Trisha,

    Thanks for writing this post. I am worried about this, too.

    I really identify with Donna’s comments above. Well meaning may not result in well being for patients who later use that health system. I more-than-often find myself advising people that it’s not enough to pretend that a patient is in the room.

    I am drawn to #3 above in Donna’s comments – this opens the door to full disclosure, which is helpful in these situations. So, someone identifying that they do work in the industry, however, for the purposes of the next 30 minutes they will represent their experience not as someone in the industry. The audience will then make a judgement, and the crowd will promote those perspectives that are unfettered.

    I think generally, a non-connected perspective is better than a connected one. I have had patient experiences that I write about, and when I talk about them I find myself subconsciously explaining the “why” something happened. Sometimes it’s important not to include the “why” for people that want to make a difference. That’s where the unfettered point of view comes in.

    Finally, I am curious about the idea of defining what a patient is on a patient panel or in a patient organization. There’s a great analogy that I came across, in the health care food industry, because people are asking, “What’s sustainable food?” And, the Green Guide to Health Care has a system to create that definition:

    http://www.gghc.org/resources.greenoperations.food.php

    (Look at food service credits)

    This keep everyone honest and the consumers aware of what the label means. I think we all want to understand what the “patient” label means in a leadership environment in health care.

    What are your thoughts on this analogy?

    And thanks again,

    Ted

  2. e-Patient Dave February 27, 2012

    Late last year I realized I’d attended 160 conferences and policy meetings in two years, which has given me a fairly broad exposure to attitudes, reactions, and the nature of the conversations that happen in different settings. And Trisha, I think you’ve NAILED the key issue:

    It’s really hard (even for well-meaning people) to assess whether the system is working if they and their friends have inside access.

    I’d say nobody should even DARE to speak for patients if, when they have a sick family member, they ask for an appointment and are told “two weeks” but can then pick up the phone and call someone (not accessible to the public) and jump to the head of the line.

    I agree with the other commenters that not all patients are good speakers or policy advisors – to me that isn’t a stunning revelation, any more than any other demographic is. It doesn’t change the core issue.

  3. Kate Murphy February 27, 2012

    Sometimes a patient or caregiver can talk about their own personal experience, putting a face on a disease or a situation. In that situation, I think we are talking about a “patient.”

    Sometimes patients speak beyond their own experience about the experiences, needs, and priorities of other patients they come to know through forums, acquaintances, support groups, advocacy organizations etc. In this situation, which goes beyond a single person, they become patient advocates.

    For me, a patient advocate still needs to have that very personal tie to the disease or situation, a tie that comes from having a disease themselves or living through an experience with hospitals, insurance, providers or other similar situations.

  4. Beth Austin February 27, 2012

    Thanks for this great post on such an important topic. Until we can gain inclusiveness in the process, truly patient-centered care cannot be achieved. This requires a paradigm shift, and some are slower to embrace this than others. I’ve seen some positive gains in this regard, such as the Patient-Centered Outcomes Research Institute (PCORI), so some headway is being made. Unfortunately, though, it often seems that many of these “patient-provider forums” are little more than echo chambers. Meaningful patient input is needed to allow innovative change to occur.