Confusion about the term "patient advisors" - what to do about it?

[A Former User]

I am currently on the 'HQO Quality Standards in Paliative Care' working group. They are calling me a Lived Experience Advisor (LEA). I too, as a newby to advocacy, found the title 'Patient Advisor' very confusing as it was the title of an individual who worked in the hospital where my husband was a patient prior to his death. She was definitely not helpful to me or to him so, in beginning this journey into advocacy, I was surprised to learn that the title is used differently. Definitely an issue I think!

Regards, Jo-Anne

[A Former User]

Hi Jo-Anne,

Welcome to PAN and thank you for your contribution to palliative care. Also thanks for posting!

WORDS-WORDS-WORDS!

Healthcare is so big and so diverse across many jurisdictions and settings that there is much confusion with "patient advisor" for providers and the public. That confusion extents to both "patient" and "advisor".

"Patient" includes the whole network of people who see the system from the perspective of the beneficiary of care. PAN offers definitions and discussion of a few of the nuances on the About Us tab on the website. I hope it is useful and clear.

Also stated there is at least one clarification on "advisor": We Do Not Advise Patients. You've raised another with the word Advocate. My sense is that an "advocate" tends to be a little more focussed and confrontational, while "advisors" tend to be more collaborative. There might be a subservient relationship implied by "advisor", too, as in this outsider who is advising to the ones in power. "Patient partner" is used in many systems now to rebalance that power differential.

Where we get in the most trouble with the label "patient advisor" is when it is a job title for a healthcare professional, as you and Alies have related. I have also seen jobs as "patient advocate". Might such a job be better known as "care coordinator" or "care navigator"?

It may not be possible to invent a more specific label for those of us who self-select to contribute to better healthcare from the patient perspective. Attitudes about compensation are changing, which could introduce fuzziness in who's a health professional and who's a paid healthcare partner.

As the healthcare system grows to realize our contribution is NECESSARY for care improvement, then our role may become quite institutionalized, raising the risk of losing touch with those on the outside. I think what distinguishes the patient from the professiona is identifying the anchor that is the foundation of knowledge and expertise: is it what's lived or what's trained?

So, what to do? Language is notoriously impossible to control. We'll have to watch the evolution of terminology, I'm afraid. But how to find clarity?

The best strategy, I think, is to ask, ask, ask, when you are first contemplating a role in healthcare advising, training, research, whatever. Our strong altruistic motives make it easy to say: I'll help any way I can, any way you'll allow. Unless we are clear on what is expected, what support is offered and what the other roles are around us, then we can easily end up shocked and offended. Or at least, that's been my experience.

Thanks again for sharing your experience to move our discussion ahead. I've offered some ideas here that many others might not agree with. More discussion, please!

Best regards, Carolyn

[A Former User]

Thanks Carolyn, this is a good synopsis of the challenges of language in this new health care environment, certainly something that is also being talked about by health organizations and provincial government agencies.

One of the many challenges I've experienced over the last 11 yrs. as an advocate and advisor is the word "patient" vs "client" vs "consumer" vs "service user". The same can be said of "family" and "caregiver". Each of these can be representative of one or more people who are engaged as a voice for "lived experience". Depending on the situation, I have used each of these examples as an identifier, some by choice, others by circumstances (with intent on us using this as a teaching opportunity).

I've discovered having a patient (or in my case - client) identifier means this experience is the prime motivator for why I am "at the table" today. I've met a lot of professionals who also identify themselves as a patient or family member but their voice is usually that of the health care organization they work with (or for). I have chosen not to work for any organization and this provides me with the freedom to say whatever I like without any fear of repercussions (financial, professional and/or in care). But this is not to say we don't need Patient Advocates in organizations, they would ensure the voice of those it cares for are considered in all deliberations. I should add that in my opinion, Patient Advocate is different than a Care Coordinator/Navigator.

Asking us how we would like to be identified is respectful and open-minded and demonstrates a true willingness to engage. If we wait (or allow) for others to make a decision on what to call us, then we are still at the mercy of the policy makers .This is our opportunity have the market meet the demands of the people they serve and respect our choice of how to identify us in the given situation.

[A Former User]

Welcome, Claude, to these discussions!

Your preference for independence and agility around the silos of healthcare is the same as mine. For me, it was not wanting to be constricted as I was coming into healthcare with no prior knowledge.

But what I know now is that the comprehensive perspective from our patient-client-carer viewpoint is exactly the connectivity that healthcare needs in order to improve, whether that be in care delivery, in research or in training professionals.

The greater the activism from a broad diversity of "us", the more that dedicated healthcare workers will appreciate the unintended consequences of system-centric care and also the abundance of ready opportunities for the system to build truly "caring" relationships. That's where patients and families benefit the most, and return to the workers the satisfaction that their investment of compassion and skill matters.

I'll be intereested in hearing more about your work (start a new discussion topic?). Thanks for joining PAN to enrich our growing foundation of experience.

[A Former User]

At the Canada Health Infoway Better Health Together workshop this week there was again a discussion of the language that came up when the 'Vision' statement was being put together.

The first attempt was

"Healthier Canadians through universal, integrated, digital health technology. People and providers engage to improve health outcomes."

The discussion that followed had some saying that the word 'people' should be 'patients', as that situates the person as a client or user.

Next version "Healthier Canadians through engagement with digital technologies"

I did not get all of the iterations and the one I offered was met with silence. The question to me was - What is this the vision for?

It was meant to be for our 1 1/2 days of talking together, so I argued that it should reflect patient engagement since we were, in fact. all patients in the room, and I happened to get almost the last word. I wish we had had more time to discuss it.

This was mine: "Empowering and enabling patients to be partners in improving our health care system through digital technology"

It has flaws too.

[A Former User]

Interesting discussion. I was at an MS Conference in early December 2016 and the patients who were invited to collaborate with researchers at this event were referred to as "community members".

It's always complicated to choose a label that will satisfy everyone while still making it clear what that person's role is. (Eg: patient vs client vs consumer) The language/terminology used IS important, but if someone is asking you to wear a label, I think it's important that they ask how you self-identify. So much of our lives as patients is out of our control so when it comes to the challenging work we are doing FOR FREE, for the betterment of health care as a whole, it would be nice if we got to decide how we want to be identified.

Labels I embrace are:

Patient Advocate/Educator

Mentor

Collaborator

Patient Advisor

Community Representative/community member

Patient (or rare disease patient)

Just my 2c worth.

Lelainia

[A Former User]

Hi I am new with PAN and this is the first discussion I read . I find this discussion quite interesting and see where terminology can be an issue .

I have joined the group as a patient even through I do work in healthcare . I quickly am realizing that I may have to clarify my participation at external events .

Learning already Thank you

[A Former User]

Welcome Lelainia and Virginia!

It is quite amazing how much impact we can experience from "the label" that gets plastered on forehead --that is, to identify our role in healthcare improvement. The problem is difficult for many reasons, not least that this is the portal through which we launch our altruistic mission to help make healthcare better, but from the agony of feeling damaged and betrayed, just a wee bit vulnerable to further harm!

If we let ourselves get defined with a label that makes us feel subservient ("advisor" can do that), some of us will feel diminished right from the start, and others feel insulted, perhaps to take it as a challenge to push back with more authority. On the other hand, when I first got started as a "patient advisor", I was just so completely thrilled just to be let into the room. I should have taken a deep breath.

So once we ARE in the room, then how do we behave?

I hope others will volunteer their experience with these new roles. For my part, I've vacillated between grovelling subservience, to behaving like a complete crank! This is a huge personal challenge. And for your appreciation in this fairly private group site, I've learned how to present myself as knowledgeable, even when my confidence was very shaky and my presence a complete astonishment.

Anyone else have experience to offer? How do you respond when terminology and confidence collide? Is there a formula for emerging as a REAL voice? Or a complete flop --yes, I've had those, too! And then, how to recover?

Thanks to everyone reading this far! Please reply with your wise thoughts.

Best wishes from Carolyn

[A Former User]

I was so excited when I went to my first Patient Experience conference, and I knew so little then, but at the same time I made some great connections and heard terrific Canadian Patients. Overall it was great even though I have heard lots of negatives about them since. I don't think they called me anything then beyond "patient".

Since then I have been to an Interprofessional Education Conference where my name tag looked like this

Annette McKinnon

Guest

(none)

(none)

Those 'nones' were my title and my academic affiliation, and doesn't the title 'guest' make me sound like I'm there now, but probably not next year.

Then there's Medicine X which used to be called "Patients Included" and has now switched over to "Everyone Included" so everyone who is not a patient won't feel left out. In fact they copyrighted the term 'Eveyone Included'.

Annette

[A Former User]

Good point about the name tags, I have often scratched out "Bipolar Disorder", "Addict" or things along this line and put in my own label (ex: Person living with Bi-Polar Disorder) and have found that labeling myself is a good way to start a conversation about this issue. My suggestion to everyone is don't be afraid to scratch out how "they" label us, put on how WE want to be identified

[A Former User]

Another example of the terminology confusion. The descriptor for the paid (professional or lay) care navigator role for private patients seems to frequently include the term "private patient advisor." Given the giant expanse of the health care domain, advising goes in every direction, from people wearing all hats to people wearing all hats, at any number of individual and organizational points of connection. No wonder there is confusion.

https://beta.theglobeandmail.com/news/national/consultants-are-helping-the-sick-navigate-canadas-health-care-system/article34714551/?ref=http://www.theglobeandmail.com&click=sf_globefb&service=mobile

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