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?)
…. 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.