Patient and caregiver knowledge as a Core Competency

[A Former User]

Hi Annette, glad to hear you brought this up with the board. I am a “citizen member” of our hospital Boards many subcommittees - the Quality Committee.

There is a great deal of work and reading at this level, and although I agree with the benefits of having patients and/or caregivers on these committees they need the skills to adapt to the pace and information presented.

At the board level you are no longer dealing with the individual but the corporation as a business and business statistics.

pushing your Hospitals to be included in departmental quality meeting and other department strategy meeting may be more beneficial for most patients and/or caregivers as they will still be focusing on the individual patient and the staff treating them.

Good Luck with your hospital board.

[A Former User]

Thanks Gwen

The Quality Committee is bound to be a lot of work I imagine.

I have since been invited to sit on a new committee at so I look forward to that, in the hopes it will be more meaningful than the toothless Advisory Council I have been on for the past 3 years.

Annette

[A Former User]

Agree there needs to be more definitons of terms to GUIDE patients & our work partners... am curious about the term "Patient Experience" and how it is defined in our Ontario projects? Have been asked by some folks "what do you mean by patient experience, what exactly is it?

Many thanks.

Looking for enlightenment,

Denyse

[A Former User]

This is a good discussion. In starting my work on a HQO standards committee, I heard the following terms for my role:

1. Lived experience representative

2. Patient representative

3. Lived expertise representative

4. consumer and public interest representative

5. patient and caregiver expert

I agree that the ability to represent the interests of patients and caregivers (without any vested interest) is an expertise and core competency. Moving in this direction shifts away from tokenism. In my professional work on standards, public and consumer representatives are considered experts as part of the multi-stakeholder consensus process. Language will evolve as our work proceeds and shows value

[A Former User]

Hi Jeanne and thank you very much for sharing what you've heard, which are so similar to the ones I've been given as well. But these 5 communication terms, like ones I've been given have a "high risk" for misinterpretation. This does not facilitate "effective communications" which forms the foundation for our being able to work together as partners.

These "different" responses leading to different perceptions seem to be in conflict with being able to work collaboratively and in partnership.Do we not "ALL" have to have a shared definition, which provides a "shared" understanding of the "MEANING"" of the "patient experience".

How can we all be on the same page if we don't share the common denominator i.e. a "shared understanding" which is the only means we can effectively work together?

Thanks again Jeanne

Look forward to hearing/learning from more PAN members -definition:"what is the patient experience?"

Best, Denyse

[A Former User]

Am wondering if there is a definition for "what is the patient experience". If so, has it been articulated by the many health system organizations working with PA's to improve "the patient experience"?

Did not intend to add to PAN members' work-load projects by my request for this definition. I would just much appreciate being pointed in some/any directions, that I could pursue.

If you have suggestions or know of any contacts, or links for information, either for individuals or, health organizations that might be likely to have such a definition, I would be grateful.

With appreciation for any assistance with this, thank you.

Best regards,

Denyse

[A Former User]

I love hearing from you Denyse! I think we come from the same planet, as opposed to.... When in meetings or reviewing proposals and the jargon is getting out of control, I want to state in a loud voice "are we all talking about the same thing? This is what I understand ..is it the same for you?"

My issue in particular is that without definitions, there is no accountability. It's always a moving target. Makes things hard to measure, design, implement, evaluate.

[A Former User]

Just about any committee using persons with lived experience will review the terminology in the Terms of Reference and decide as a committee what language they prefer to use.

ive found over the last 10 years language has changed and updated to become more equitable and accessible using current jargon and buzz words.

Even if PAN recommends the use of certain language and definitions, outside the HQO maybe, we unfortunately have little control over how committees and Boards write their ToR’s.

And, in my experience in a couple years we will find a better jargon ourselves needing to update the language. This is an on going development of language and definitions as our activities develop and expand in Canada.

[A Former User]

Gwen, you have captured my feelings on this one. Having said this, I do like the concept of "lived expertise" vs "lived experience" . The more we can do to show that representing the interests of carers and patients is a unique stakeholder expertise will help to advance this field.

[A Former User]

Jeanne, thank you for your comments. That’s the first I have heard “lived expertise”. I will start throwing it into the conversation this fall during ToR review.