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Aug 28 2011

What Shall We Call Ourselves?

I’ve just returned from a marvelous week visiting with, and participating in, patient empowerment and advocacy experiences that included activities like video, webinars, panel discussions and pot luck dinners. A whirlwind!

More impressive, however, is the variety of interests and skills of the wonderful people I met and worked with.  From patients, to patient safety experts, to providers, to educators, to administrators, to hospital employees, to – yes – patient advocates.

You can imagine the discussions that took place!  During the week, my brain was going a million-thoughts-per-hour as we covered dozens of topics related to both empowerment and advocacy.  So many great ideas were shared, with some grand ideas for moving forward to help patients.

One theme popped up almost as much as any other;  that is – the confusion over the title “patient advocate” and what it means to those who want to become one – or may need one.

This is not a new question. In fact, in meeting many of you over the past few years, the same concern has arisen…. exactly what is a patient advocate?  How can we use the same title for a medical/navigational advocate as we use for the person who reviews and adjusts medical bills?  or the same title as the person who volunteers for the local (name your disease) charitable organization? or the person who is supposed to provide customer service type services in the hospital (but is employed by the risk management department to allay lawsuits?)  etc etc.

Yes, there are some variations on “patient advocate” – but I don’t think they really clarify:  health advocates, or nurse advocates (excuse me – isn’t “nurse advocate” redundant?) or patient navigators, especially knowing that the term “navigator” seems to have been co-opted for some cancers where government grants and pharmaceutical companies control the conversation.

Then there’s the cross-over to case management and geriatric care…. again… confusing US – but perhaps even more importantly – the general public.  There is additional cross-over with home health, too.

Exacerbating the conversation is the fact that to many people, the term “advocate” has a negative connotation. I hear this most frequently from providers who hear the term advocate, and go on the defensive!  Of course, that’s the opposite of how we want them to feel.  But if you look up “advocate” in the dictionary, you’ll see description terminology that includes “defend, push, argue for, vindicate” and other contentious words.  I see their point.

The growth of patient advocacy, as a one-on-one, improve the experience of the patient and improve outcomes exercise, is just getting started.  This is the ground floor, the beginning of the road, and we, as its pioneers, have the opportunity to adjust the conversation.  If we are going to look at tailoring what we are called – we, who are privately hired and paid, assistive, patient-focused shepherds of patients with a variety of needs, this is the time to do it.

So – what shall we call ourselves?  Should we stick to our guns as “patient advocates”?  Or do we want to begin a shift to a more accurate term that only WE, as private patient hand-holders use?  Some ideas:

Patient Guides? or Health Guides?

Patient or Health Advisors? (or Advisers?)

Patient Aides?

Patient Consultants?

Patient Coaches?

…. perhaps you have a good idea.  Is there a name we can agree on, that describes the bigger picture of who WE are, as opposed to what all those other professionals are?

Make a suggestion below!  Or weigh in on someone else’s suggestion.  Next week I’ll post the opportunities and barriers we face when it comes to helping the public embrace any new title we might choose.

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8 comments

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  1. Barbara Abruzzo

    I use Healthcare Navigation Specialist and have been doing so for 12 years now. There is never any confusion about what I do. I developed this phrase with a very careful focus on having it truly define what I do. Included in this is crisis intervention, disease management, advocacy, health coaching, aging in place, etc but all under the umbrella of Care Navigation. As an RN, I do not use the term patient to define my clients except when making a referral to a physician and I do not see how a non-licensed healthcare person can use it. The services you listed are all healthcare related, the operative word being “care”, with the exception of individuals who assist clients with insurance reimbursement. So I would recommend a different description or title for individuals providing that type of service. The issue that I have Trish, is that since listing with Advoconnect, people call us for Companions! And we are not talking about accompanying someone to a physicians office. We are talking about Home Health Aide Companions. So if possible, I would really appreciate having this clarified on your website pull down menu. Maybe a more specific list of services that we all can choose from that would fall under ‘advocacy or navigation”. Thank you.

  2. GetHealthHelp

    I’ve had many titles to describe the same services I’ve provided for over 30 years. I started out as a health care agent for a major union. Then I became a patient advocate, which includes all the services that Barbara offers, including the billing problems and acting as Health Care Agent on the health proxy for people who don’t have anyone. I have been looking for a new title since many people react to my business card with, “Oh, I do that too.” The thing is, they don’t do it in the same way. I also agree with Barbara about the companion issue. Since I now work mainly with seniors, the children who pay for my services don’t get to see that what I do at a Doctor’s visit is much more aggressive than what a home health aide or a neighbor can do. I’ve started using Resource, but that is only part of the job also. I get the best reaction when I say that I’m the daughter you may not have or who is not available to do everything you wish for your parent’s healthcare.

  3. Lyndel Walker, RN/MSN-RNPA

    I would place a lot of stock in Barbara’s answer since she has so much experience using the term, Healthcare Navigation Specialist. However, as a newbie to the area, I find prefacing my claim to being an advocate with the term “Professional” helps to communcate that I get paid for it. Using “Personal” helps to communicate that THEY pay me. Thus, I tend to use Personal, Professional RN Patient Advocate to describe my services – or Patient Advocate for short. I guess my vote is to stick with Patient Advocate as an overall term with individuals using additional descriptors to fit what they do.

  4. Linda Adler

    I’ve used a couple of titles that work well in our area. One is “decision guide” since my business focuses squarely on helping my clients make better decisions. The other is “health care sherpa”, which is what one of my colleagues calls me, and his clients seem to like it. I sometimes refer to myself as a coach, even used “mediator” a few times. Truth be told, I use what works best in each situation, as they are all unique in terms of what’s required.

  5. Patricia W.

    I really like Barbara’s title. I have been uneasy with all the choices you listed in the article for the very reason’s Barbara cites.

    Specifically, my reactions to Healthcare Navigation Specialist are:

    Specialist – this is a code word in the healthcare industry for someone who has authority and should be deferred to (whether that is appropriate is beside the point). Including it in the title automatically elevates the person’s standing, suggests the person has extensive experience in their field and implies the professional part that Lyndel referred to – all in ONE word! Good one Barbara

    Healthcare – clarifies that your assistance may not be limited to the relatively narrow relationship defined by the word “patient”. And there are many relatively negative associations with the word “patient” including that of being a passive participant who has relatively little power or expertise. Patient implies (in my experience) that the power, expertise and experience lie with the doctor. This is precisely the opposite of what we want to convey in our title (in my opinion)

    Navigation – I am still on the fence about this one. Frankly I think it’s too big/complicated a word for many people. Admittedly, most of the people/families who would use this service are college educated native-English speakers. Those with less education and non-Native speakers typically need our services much more – regardless of their ability to pay. but I don’t really have a better suggestion. I don’t think Guide works well because it implies you lead the way but don’t actually do any work with the person.

    I do not like advocate. My business background leads me to interpret the word “advocate” as “lawyer” or possibly someone who provides legal services at the paralegal level. At least it is widely used that way in my area. This is misleading and creates an adversarial climate right from the start.

    Kudos Barbara – this is the best term I have heard yet.

    1. Barbara Abruzzo

      Very much appreciate your acknowledgement Patricia. And I really enjoyed reading your assessment of each word, especially the word Specialist! Re Navigation – my client population does tend to be the college educated boomer seeking some type of care navigation support for themselves or a loved one. My clients seem to understand and embrace the term Healthcare Navigation and that my training as an RN and 35 years of healthcare experience does in fact entitle me to use the word Specialist.

  6. Patricia W.

    You’re welcome Barbara.

    I enjoyed the chance to analyze this problem more carefully. I have known that the titles I have heard used always bugged me – but hadn’t taken the time to pin down what exactly felt wrong to me.

    Navigation is an interesting word. It does not equate with Navigator for me. Navigation is a specialized skill and is of course an action word.

    Navigator is someone who tells the captain (or whoever) how to get where they want to go or verifies they have reached their destination. It is not an action word but is instead a description of a person. A person who has a relatively passive role. I think the role that we are defining here is sometimes that of a navigator but more assertive action is often required. A client may not even know that a particular path is available or appropriate. They may not be capable of “captaining” their own vessel to the extent required. At least that’s the way it seems to me.

    I think Navigation applies to our actions but somehow Navigator doesn’t really describe what we are.

    Not sure I am making sense but I don’t have anything better to suggest.

  7. Marcia

    I like Barbara’s title

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