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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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18 Responses to “Who’s Really a Patient? Skewed Opinions Result from Inside Information”


  1. 1sue 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. 2Jonathan 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!

    Jon

  3. 3Kate 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. 4Joleen 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. 5DCpatient

    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.

  6. 6Ted Eytan

    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

  7. 7e-Patient Dave

    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.

  8. 8Kate Murphy

    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.

  9. 9Beth Austin

    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.

  10. 10Tom Farrell

    Excellent, thought-provoking post. Something I’d never considered until now.

    I’m a respiratory therapist, a pulmonary function and sleep technologist. I’ve been a hospital executive and a medical practice manager. I live with a doctor. And my mother was a nurse.

    One of my earliest memories is of waking up in the children’s ward in a Passaic NJ hospital, freshly ex-tonsiled, to the site of my Mom, white cap and uniform, hovering over my bed.

    Talk about industry insider.

    And even though I have chronic disease (asthma) and a mechanical heart valve, I’m an insider patient, I admit it.

    Yet as a professional patient advocate, I offer certain benefits to my clients that an “outsider”-your typical patient- could not present.

    So, while the term “patient” may need redefinition, so too may the title “patient advocate”.

    I agree: I truly do not understand the patient experience, and I’ll not speak for patients. I am certainly not a patients’ advocate.

    But I am my patient’s advocate.

  11. 11Pat Mastors

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

  12. 12Kait 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.
    kait

  13. 13Kate 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.

  14. 14Eve 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.

  15. 15Erratus

    Trisha,

    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)

  16. 16Kathy Day

    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.

  1. [...] 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. [...] 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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