Patient Advocate or Patient Advocate

I’ve had a few past and present conversations and found when we throw the term "patient advocate" in the air; what I’ve learned what should be considered a slam dunk in what you and I think the term means, is not always the case.

I was interested in a possible role coined "patient advocate," and the source I used for the definition seemed just as perplexed in what the term means outside of an actual patient sharing his or her story.

I’m still waiting for someone to look into the differences in the way the term is used and what it entails when we look at it from a hospital staff role.

Recently I had another conversation and I tell you, I felt as though the person wanted to make sure or clarify what I meant by the term, so I’m thinking should it be that hard in figuring this out as the term seems pretty simple and self-explanatory? I wanted to delve a bit deeper. Let’s go…

What do we mean by patient advocate?

So the NIH (National Cancer Institute) terms a patient advocate as:

"A person who helps guide a patient through the healthcare system. This includes help going through the screening, diagnosis, treatment, and follow-up of a medical condition, such as cancer. A patient advocate helps patients communicate with their healthcare providers so they get the information they need to make decisions about their health care. Patient advocates may also help patients set up appointments for doctor visits and medical tests and get financial, legal, and social support. They may also work with insurance companies, employers, case managers, lawyers, and others who may have an effect on a patient’s healthcare needs. Also called patient navigator."¹

Care partner?

The role of a Patient Advocate can be anything from:

• Tracking medications
• Carrying out a patient’s request (I would think this may be similar to a proxy)
• Ensuring the patient’s rights are followed
• Solving conflicts in crisis matters with health care professionals and the patient’s family
• Following up on answers to questions posed by a patient

Um, so after delving in here, I would think these functions and duties sound rather similar to a care partner (caretaker), of what was and I believe still titled a social worker.

Patient Advocate (The other one…we know)

My role as a patient advocate/leader is speaking for myself and sharing my voice and experience on what I have dealt with as an advocate of multiple myeloma. I believe that’s pretty cut and dry, so what exactly does this cover?

Advocating for myself

Covering my rights sounds about right in the care and quality when visiting a doctor in having 1:1 conversations answers to my questions. Medication tracking was done on my own with my own method of daily medication when I was on treatment, and frankly, no one assisted on the best method of reminding me or the best method that worked best for me, I figured it out on my own.

As for working along with my employer, that would be all me while maybe some would need service I would think that would be a red flag for the employee having a representative speak for them on their cancer care in need with the employer- just doesn't seem like a wise move. My method of not informing anyone because first, it was none of their business, and secondly, this didn’t stop me from doing the job I was being paid for, so there was definitely no need-to-know relationship.

Many of the areas mentioned in the latter term are what I’ve or my care partner experienced. This wasn’t necessarily something a hospital or organization helped cover. Again, the first definition seems to imply or labels the responsibilities as what we know a social worker should cover.

In writing this piece I’ve concluded perhaps in most cases the patient has had no choice but to cover and figure out all areas that are listed because of the un-clarity of where, who, and how to discuss specific issues in their care, so wouldn’t it be rightly fair to say we’re the true Patient Advocates, where the others are imitators?

Carry on!

 The time to fight is now, with integrity, grace, hope, and a smile….when you feel like it