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Jan 13 2013

Clearing Up a Misperception About Patient Advocacy

carrepairIn 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.

Here’s why:

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.)

• • • • • • LEARN MORE • • • • • •

FOR PATIENTS | FOR ADVOCATES | FOR POTENTIAL ADVOCATES

• • • • • • • • • • • •

 *(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.)

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6 comments

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  1. ptknowhow

    Very well said. Most patients have a trained need to immediately place the medical provider in the driver seat. As advocates we need to take the keys away from some of those providers and teach the patient how to drive their broken car through dangerous curves.

  2. Michelle.gilmore@heartwoodhealth.com

    I respectively disagree with the notion that heath advocates should be on the outside looking in. I think this approach sets us up for an adverserial relationship rather than a collaborative one. I often say that it is unfortunate that advcocates are needed, I actually think that healthcare providers are glad that our role is emerging. Sure, there are some who do not want us around, and feel threatened, but my experience has been they are in the minority, not the majority. While we are not a provider we are a coach, a confidant and an educator. Our role is to empower our clients and their families so that they understand their options and can make the right decision for them. While physicians and other direct providers also say this is their role, patients and families, don’t often understand or hear everything they are told, and because of the dsyfunction, they are not always able to follow up or spend the time that would make the system ideal. As a health advocate we are their to reinforce and increase our clients understanding of what option has been suggested by their provider. In addition, we can provide our clients with alternative options for treatments, questions to ask, suggestions for second opinions and more. As an insider, we will be more successful at being “disruptive” when necessary, so that we can achieve the best outcomes for our clients.
    The point of advocacy is to assist patients in getting what they want, and this is best done as part of the team. We should be come part of the solution for improving the system and our patients/clients health outcomes.

  3. Carol Ann

    Respectfully, if there were an existing collaborative to join forces with, that would be optimal. I don’t view us as adversarial either. I view us as a positive trend setting force creating a collaborative within a completely dysfunctional system one patient at a time. Most disciplines working within the system would agree that it is dysfunctional. I am told every day by physicians, nurses, MSW’s, CNA’s. Thank god you are here. There is such a huge need for what you do. We as Patient Advocates are a collaborative penetrating a dysfunctional system.

  4. Trisha Torrey

    For clarification sake: I have no intent of suggesting a look from the outside to the inside should be anything but collaborative, and certainly not adversarial. Far from it.

    Therefore, I have to respectfully disagree with Michelle’s argument that looking in from the outside could create an adversarial relationship. In fact, I think that for most advocates, realizing they are no longer an internal part of the system makes it even easier to be collaborative.

    Consider:

    By far, the #1 reason nurses give me for wanting to become private advocates is because they feel that dealing with the current internal pecking order (in both doctors’ practices and hospitals) strips them of their ability to be real advocates for their patients. By moving outside that framework, they are freed up to do what they were trained to do, and what they like to do – be an objective, effective advocate for patients who need someone in their court.

    The truth is – once an advocate is working successfully with patients as a private advocate, then he or she HAS stepped outside the current structure even if it’s only by virtue of the fact that private advocates are paid differently – they are not beholden to insurance and reimbursements. They are beholden only to their clients.

    No matter where in the equation the advocate stands, inside or out, the relationship with a provider will either be collaborative or it will be adversarial, or it will be somewhere in between. Successful advocates will always strive to create a collaborative win-win-win relationship no matter “where” they see themselves.

    1. Michelle Gilmore

      We may be talking semantics, we technically are not part of the system, because we are not paid for by insurance companies or others. However, I believe that our goal should be to strive to be seen a “part” of the system and a valuable part ot that system, even though we are paid by the individual patient. We have had several very recent experiences where providers suggests to their patients to find a healh advocate to assist them in understanding their treatment. The current system does not often allow providers the time that is required to be sure that patients understand their options, side effects, etc., although that is part of their role.(AKA = broken system) We are pioneers in this respect, and are adding a new profession within the system. As Private Health Advocates, we can bridge the gaps and in the process gain respect and a place at the table.

  5. Gayle Gwozdz

    I must admit you had me sitting on the edge of my seat waiting to see if with all of my extensive education and experience I would be the one to get the answer right the first time. But alas, I didn’t. I’m not sure though that there is one right answer.

    I think encouraging patients to seek out second and even third opinions regarding their health is a very important part of ensuring that they receive the best (or at least “good”) healthcare available. What came to my mind first was to ascertain what they already knew about their condition. Unless they had an exceptional (not meaning genius but rather exception to the rule) physician, it is quite possible that once the doctor said “cancer” or “AIDS” or some other catastrophic medical diagnosis, the patient may not have really heard much else that was being said because his/her brain was on overload trying to process and pull from within all that it already knew about people who have or had this condition. One would hope that the physician would have the patient come back in a few days or the following week (even better to have them meet with the group’s nurse practitioner if they have one) to give the patient a chance to digest the diagnosis, do some research, talk with friends and family, and then come back with a friend or family member (or a HC advocate) to develop a plan of care. I would want to make sure that before I referred them to another provider, specialist, or facility that I was sure the patient couldn’t get the necessary care from the initial provider or facility. Quite possibly, depending upon the condition and the sense of urgency, the patient could start treatment locally while exploring other options. Many (the good ones anyway) providers are willing to help patients obtain second opinions and a referral from them could possibly help move a patient’s consultation date up by several weeks as opposed to the patient calling to request an appointment on their own.

    As an adult nurse practitioner I can appreciate the fact that being in the role of an advocate may seem like an offensive position but I think we need to remember that what’s more important than putting dysfunctional providers and healthcare facilities in their place for the things that they do wrong, is to help the patient get what they want/need and not to let our egos get in the way. I’ve found that whenever a “win-win” situation is possible (i.e. patient gets what they need and the provider or facility saves face) it works out best for everyone.

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