Compensation for Advisors: What do you know about how much and for what?

[A Former User]

Terrific synthesis of the issues. Thank you Denyse!

[A Former User]

Thank you JoAnne for your comment. PA's are pioneering and blazing new trails in this field. Glad we have such a forum as PAN to share perspectives and spread our views, findings, suggestions and lessons learned.

Best to you

Denyse :)))

[A Former User]

Hey Denyse,

Great to hear your strong voice and wisdom from your immense experience! Did you see the essay I wrote for Longwoods Healthcare Quarterly, back in December? I think it would chime for you --and for other readers of this discussion string.

Here's the link "The Capacity for Patient Engagement: What Patient Experiences Tell Us About What’s Ahead". [Please let me know if there's a pay wall.]

That's a tame title for some of the issues you also raise in your post above. The article was requested for an issue devoted to patient engagement in partnerships "Supporting Engagement-Capable Environments, sponsored by CFHI. I wanted to challenge healthcare professionals who would be showing off their accomplishments.

Just a little reality check, especially thinking about recent criticism of patient partners all being from the same demographic. There's a reason --and that's the recruitment constraints. We are expected to fit into a convenient pseudo-staff slot. At least too much of the time. I think, finally, that is beginning to change.

Best wishes to you. Cheers, Carolyn

[A Former User]

Agree, Carolyn.

They want diversity but block the means to attain it. Even what's happening currently, I don't see how it's sustainable over the long term, never mind grow and develop without stable infrastructure. (Funding, accreditation, etc.

Love the conversation.

[A Former User]

Hi Carolyn;

Much appreciate your comments and reference to the link which I had not previously seen but now have read and printed out for much more "in-depth" consideration/reflection. My first pass observations are you have hit "all" the "nails" on the "heads" as to the current barriers frustrating all stakeholders in their attempts to effectively and successfully partner to implement "quality improvements" in our system.

As with health treatments, where there are "best practices" to follow, so too, are there best practices in collaborating, partnering, co-designing with patients in setting and achieving goals. These "best practices" "exist", with sound "evidence" and when appropriately implemented, they work. As the health system provides the "Patient Engagement" leaders, initiators, teams, their role, (expected by patients) is to consciously choose and be accountable to themselves and patients in using them. Realizing the benefits when working together can/will reinforce their use.

A consistent approach, orientation & demonstration of best practices across "all" projects/working sessions would facilitate understanding, needed/wanted by all stakeholders. The best practice of 2-way stakeholders' constructive feedback post each group working session would minimize current frustrations, motivating and enabling us to make progress. Additionally this feedback practice would enable us to quickly identify progress and/or what we need to change/modify to achieve our objectives, desired outcomes. Win-win-win.

My concern is without a plan, a consistently applied approach, both patients and health professionals will lose their motivation to maintain involvement, not put forth their best efforts (especially patients who are already burdened with illness or caregiving +++) and more time & money will continue to be wasted on the health system. Who suffers? Our aging population, their children, taxpayers who pay the bills and our whole society which becomes much less productive. These "Best Practices" are "not optional" for success. They are, through years of research pre-requisites for all stakeholders-PEOPLE in any organization who work together to achieve a quality, cost effective, sustainable organization.

Continuing to reflect, thanks Carolyn,

Denyse

[A Former User]

I’m a UBC health mentor and have been since 2012. I asked about health mentors maybe getting access to MOA (Museum of Anthropology) at the student rate. I also asked about us being able to buy (pay for ourselves) HM branded jackets. Neither has happened.

we used to get compensated for bus/parking to orientation & the January meetings and had access to the internet hub & library. All these things have gone away. We current are not being compensated at all. I’m not sure why, but I’m not thrilled about it. Most of it wasn’t costing the program anything.

[A Former User]

Oh and I should also say I’m the first and only patient advisor on the Medical Imaging Advisory Committee. I’m not being compensated anything for that either-not even my transit costs. (I commute an hour to downtown Vancouver from my home.) The entire committee aside from me are MDs & Ministry people, some of which are flown in to the meetings and I’m assuming all of which are being paid to be there.

[A Former User]

Hello Lelainia.... great to meet & hear from you and much appreciate you sharing your "experiences".

These make me think, we, as PA's, in whatever form/title we adopt/are given, are having PA "silo-ed" experiences, which is a significant current reality (silo-ed health care) we are trying to correct within the current health systems and which we experience when patients/caregivers. Our current PA "treatment" is in need of re-ALIGNMENT i.e. coordination, integration, and consistency for what and how we contribute to improvement initiatives for one "simple" reason. The health systems defined and articulated how they they wanted to work with us - "partners" collaborating on improvements.

In my dictionary, thesaurus, "partner" is defined quite differently from the treatment i.e. behaviours, actions towards PA's by our health systems since starting improvement work. This current treatment does not communicate, translate and/or leave a perception we are true partners. If there was a comprehensive, compassionate understanding of the impact of our "partnership challenges" i.e. 24 hour caregiving, draining of financial resources & emotional, physical effects, am sure health systems' behaviours, actions would reflect it. Wonder how many consultations were held with potential PA's to determine what we would require to "partner & be successful" in Patient Engagement Projects? Again, "nothing for us without us" comes to mind

A big "Thanks" to PAN for enabling us to exchange experiences, perspectives, opinions and have these discussions. Interested to learn more from PA's across the country and maybe even, dare I say, form critical mass to educate, inform our health system colleagues on a consistent definition of & treatment of partners and the values, principles that will better support our engagements.

[A Former User]

I am definitely late to this conversation, but appreciate all the various perspectives. The Society I am involved with (IMAGINE Citizens Collaborating for Health) is cycling back into these discussions again, prompted this time by an external group that actually wants to make some sort of contribution to acknowledge the value that our group brings to their efforts (and our collaborative efforts).. Because we are a formal group (and therefore don't actually refer to ourselves as 'advisors' but rather partners or citizens acting more or less independently.. but that is not relevant to this discussion I don't think. What we bring to tables if valued by others and hence the compensation question arises periodically. I do not have time just now to adequately digest all the contributions in this discussion stream, but will reflect further and share as we go forward. The collective struggles of folks in this discussion reflect how complex the challenge is!

[root]

This post is deleted!

[root]

hi