In an email conversation recently with the administrator of a new advocacy program (which will open up to new students in Fall 2013), I was asked where I saw the role of health and patient advocates within the healthcare system.
I had to think about that for a few minutes. I decided that I don’t see advocates as being “within” the healthcare system at all. Our role is actually from the outside, looking in – and that’s where our successes for our patients can be found.
The necessity of advocacy services comes as a result of the dysfunction of the system. Because the system is so dysfunctional, it requires a positive force from outside it to manipulate it in different ways to improve patients’ outcomes. (I’ve talked about this disruption before.) If all we did was work inside the existing dysfunction, then I don’t think we could be very successful.
Now don’t get me wrong. I’m not suggesting that understanding how to work within the system isn’t necessary – it is, absolutely. Truth be told, the better you, the advocate, can use the system, the better chance you have of determining the workarounds necessary for your client.*
But that’s not the same thing – being a part of the system isn’t the same as getting what you need out of it. Here’s a metaphor: you have a car so you can get from here to there. In order to run well, your car needs an engine, a steering mechanism, and wheels. But you don’t have to be part of that system to get the most out of your car. You don’t have to build the engine, change the oil yourself, or replace the tires in order to use your car to get you from one place to another. YOU are the driver, relying on maintenance and repair only when necessary.
Surprisingly, many advocates don’t understand this point. And when they don’t, I wonder whether they have found the best outcomes for their clients. Here’s a little test I give a soon-to-be advocate when he or she contacts me for the first time. I ask, “Suppose a potential client contacts you, says she has recently been diagnosed with something like cancer, or Parkinson’s, or she tells you she needs someone to help her understand better what her treatment options are, and needs help deciding what to do next…. What’s the next question you ask her?”
There are several answers I hear regularly, but the one answer I listen for is the answer that tells me who really “gets” the point of patient advocacy. It questions the status quo. Before you peek at the answer below, but I ask you to think about it for a moment. What is the next question you would ask that potential client?
So why is this concept of being outside the system important? Because one of the arguments I hear on a regular basis from those who work inside the healthcare system is, “We don’t need another level of provider in the mix – and that’s all a patient advocate is. What we need is…. ______”. Where that ____ will be variations on a theme that often involve more of the same stuff that dysfunction has created to begin with.
You may hear the same argument from “insiders” to the healthcare system. It’s their way of dismissing you – of making you feel irrelevant. I believe they are absolutely wrong, and I invite you to share this same reply – that the entire point of patient advocacy is to use the system to get patients what they need, not to be a part of the existing dysfunction. (OK, you might not want to use the word dysfunction, but you get my point.)
And if a potential client asks you, Remember – they are already unhappy with the “inside” or they wouldn’t be looking for an advocate. They’ll understand and appreciate the concept of using the system, not being a part of it.
I suspect there will be some of you who disagree with me. I invite discussion (below, in the comments). Do you consider yourself an insider to the system? Or are you the disruptive element who will get patients what they need?
(The answer to the question – “What’s the next question you would ask that potential client?” is: “Have you gotten your second opinion?” And if so, but those opinions conflict at all, ask them “Have you considered a third opinion?” I find that those who have been clinicians and wish to change careers to professional advocacy (nurses, advanced practice nurses, doctors) often miss that important aspect of being a good advocate and jump right to the patient’s request. Stepping back, inquiring about extra opinions, isn’t what “the system” would promote.)
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*(If you don’t have a good handle on the system, and you’re just thinking about becoming an advocate, then I recommend You Bet Your Life! as a starter. It’s now being used by at least 5 educational programs for advocates.)