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

[A Former User]

Thinking about patient engagement and where it fits into healthcare, one thing that stands out is the importance of quality and measurement.

But the measurement we see is overwhelmingly system centric.

Zayna Khayat recently quoted Jeroen Tas, the Chief Innovation Officer of Philips as saying there are around 6000 metrics in healthcare

under 5% are outcome based

under 3% are patient defined metrics

So I would suggest that what the health system values is what they measure, and if patient engagement were a real priority it would be the subject of more measurement.

That topic is not directly about compensation, but I think it ties into it from a value lens.

[A Former User]

Here's another document about compensation

How do you compensate peers or people with lived experience?

Peer Payment Standards created by BC Centre for Disease Control

The BC Centre for Disease Control's (BCCDC) new [Peer Payment Standards](http://www.bccdc.ca/resource-gallery/Documents/Educational Materials/Epid/Other/peer%5Fpayment-guide%5F2018.pdf)

http://bit.ly/2FoSvvR

[A Former User]

Reviving this quiet thread to share this article:

https://www.painnewsnetwork.org/stories/2018/7/16/the-hidden-costs-of-patient-advocacy

I realize not every patient advisor does advocacy work, but it is important to stress that expenses are incurred, whether you do advocacy or not, and that the work should be remunerated, somewhere along the line.

[A Former User]

I've been an advisor for 10 years although I'm not in it for the money I think some remuneration is due, the Organizations benefit from our input. I don't think it needs to be a large amount say minimum wage plus a couple dollars and expenses. People don't realize that most of us spend time at home researching what ever project we are involved in.

[A Former User]

That article makes you think about what it takes just to be a patient advisors at all. The work I do is the main reason I use wifi, printer, toner, paper and cell phone.

Recently I went to three conferences over a few months. Though I did not have to pay for flights and hotel, the money I had to spend shocked me. I still have debt hangover.

[A Former User]

Mary Anne,

I am exactly on the same page as you as to a spectrum of patient advisors. Some advisors start out carrying out smaller tasks. Then extended periods of exposure will result in greater experience, expertise and skills, like development on any job. Advisors may make intentional efforts to further their skills by enrolling in courses and doing self-study. What first begins as assisting later becomes a "service" like any other service. I don't expect my plumber to work for free and the more senior the plumber the higher the rate he demands. I agree it is time to stratify, based on experience and capacity. A system of advisor mentors could create a comprehensive system of advisor service providers, enabling users of the services to choose what level they require for their project.

[A Former User]

Hi All,

The conversation continues, it seems, on many levels, about compensating patient-advisors for their contribution/participation in improving healthcare outcomes across the board.

Glad to share that recently the SPOR Networks in Chronic Disease and their patient partners made recommendations on harmonizing an approach to Patient Partner Compensation across all SPOR Networks and SPOR SUPPORT Units. See the document at:

https://diabetesaction.ca/wp-content/uploads/2018/07/TASK-FORCE-IN-PATIENT-ENGAGEMENT-COMPENSATION-REPORT_FINAL-1.pdf

I think this is an important step in recognizing the valuable contribution of time, effort, experience sharing, capacity-building, and knowledge translation that patients make in improving healthcare outcomes in Canada through research, especially since SPOR (Strategies in Patient Oriented Research) is a pan-Canadian initiative of CIHR (Canadian Institutes of Health Research), which, of course, is a department of the Canadian Government. YAY Canada! This is a great start to coming up to speed with other countries like Australia, UK and others who have already established compensation guidelines for patient participation in research and related.

To be followed!

Mary Anne

[A Former User]

Thanks for that patient compensation report Mary Anne. I heard it was coming but the people who mentioned it just didn't bother to send it on, so I am delighted to be able to have a look at it. You'd think reports like this were state secrets stamped with a Need To Know, or Your Eyes Only on the cover. (Yes I have been watching James Bond movies this weekend)

As a possibly over-active patient who is a member of many groups which discuss this topic regularly, and some who were involved in its creation it seems significant to me that access was secured through our own network - one that we independently formed and work with for the benefit of patient advisors and family advisors.

Lately a hot topic has been trying to justify patient engagement by proving that there actually is a 'return on investment' (ROI), because of course why would the health care system want to fund something so nebulous as a way to improve the capacity of patients.

Annette

[A Former User]

Annette,

Good to hear you are over-active. When I'm tempted to sit back and refrain from providing information or commentary to various stakeholders , you are my inspiration to open my mouth..whether they like it or not.

Even if ROI can't be measured, I believe that with these guidelines there can be better budget management, variance analysis capabilities and some quantitative measurement. Maybe just hoping against hope.

[A Former User]

So what do people think of the recommendations? Are they useful? Alies

[A Former User]

Hi Alies,

I think these are useful and have made myself a copy. Unless I am asked about compensation I am not sure I feel comfortable bringing it up. But as I said I will keep my copy for reference.

Thank you

Virginia

[A Former User]

I hate being asked what I should be paid. I'm hoping I can now point people to this document. And, like you, Virginia, I am totally not comfortable bringing it up.

I suspect this conversation about compensation will continue on for a long time. Alies

[A Former User]

This is why I believe the guidelines are so important. Some patients don't feel comfortable and I'm sure, neither do other stakeholders. Even having to ask if there is a budget creates tension and awkwardness. We buy goods and services based on market value...what the market will bear. OR cost plus.Then there is measuring value. Makes me want to look up accounting for non-profits. It's an area that's grown. LOL

[A Former User]

All: I am linking to a good research article with practical help regarding patient partner in research compensation.

https://pxjournal.org/journal/vol5/iss3/2/

The authors include a number of patient partners and it applies to the Canadian context.

I would be interested in any feedback on this document. Alies

[A Former User]

I’m so happy PAN has continued the dialogue on this topic. I will try my best to attend the call but it is a work day for me which brings me to a point I haven’t seen covered in this amazing thread. Privilege.

Many patients with immense lived experiences are not able to participate in many patient engagement activities because they work and are sacrificing vacation to be present, don’t have vacation available because of their job, low-income, children to care for, unable to travel, and the list goes on. It is a privilege to have time to volunteer and we will never recruit the diversity of perspectives without providing compensation.

Hope to be on the call - hopefully it’s a quiet day so I can sneak out of work!

Laurie

Sent via Groupsite Mobile.

[A Former User]

I have been a lived experience advisor for about 10 years and generally I am NOT compensated for my volunteer work and rarely have received expenses for travel or parking.

The last few years working with HQO and UHN on a couple of projects I have received compensation plus expenses. My HSJCC committee also insisted on compensation, which was the first to provide this to me plus expenses. I find it is becoming more common to have expenses reimbursed but not compensation for meetings.

Even my federal government Roundtable does not compensate, only provides reimbursement of expenses for travel and meals and hotels. With this committee we travel across Canada from 2 to 4 days depending how far we are travelling.

i would say 8 out of the 10 years all expenses were out of pocket without compensation but within 50 kilometres. The last 2-3 years I am travelling more frequently and further, with expenses reimbursed most of the time when travelling outside my local area.

Even though I live in poverty I don’t do patient advisory for compensation; I do appreciate having my expenses reimbursed for travel and parking. Reimbursement has allowed me to expand my volunteerism. Some of us need to be careful how money is given to us and that it is specifically stated as an honorarium as extra income can push you into another tax bracket and higher income can affect cost of subsidized housing, drug deductibles etc...

Gift cards are nice, but when living on a low income useful cards are most appreciated. Groceries, Gas, Walmart, etc...

I would definitely accept conference registration, but have also offered to speak and assist at conferences in order to attend.

[A Former User]

Thanks, Gwen! This is very useful. You've had a real variety of experiences over all these years with many different jurisdiction levels. I'm sure this means different expectations about what you can (and do!) contribute. I hope you can dial into our PAN Parle on March 28 to join the discussion about compensation. Issues about financial status are very real! Best wishes for a great weekend.

Toll-free 866 862-8550 Thursday March 28 PAN Parle

10:00 am Pacific; 11:00 am Mountain; 12:00 am Central; 1:00 pm Eastern; 2:00 pm Atlantic; 2:30 pm Newfoundland

[A Former User]

I can wholeheartedly agree with you Laurie.

When I was working it was a balancing act between holidays, doctor appointments and health. Working full time with a chronic disease is difficult, even when your position is fairly secure.

There was no room in my work week for volunteering, and usually not enough energy left for evening events. As it was, I felt guilty about neglecting my family by putting working full time as a higher priority.

Then once you factor in aging relatives who need help....

Annette

[A Former User]

Laurie and Annette, you are opening at the BIG question of what the costs are for patients considering getting involved as advisors in the first place. This can often be an impossibly difficult balancing act after accepting a partnership, too.

You will be interested in an article (LINK, also below) I was invited to write recently. I wanted to address at least a few of these exclusion criteria, but knew it would be read by provider and research clients of our advising. That's the audience for Longwood's Healthcare Quarterly.

This issue is devoted to profiling Patient Engagement in Canada and funded by CFHI, the publicly-funded Canadian Foundation for Healthcare Improvement. I guessed that the issue would otherwise be crowing about how terrific patient partnership is --which it is true (sometimes), but I wanted to point out some broader significant limitations. Financial compensation is a part of it, but only a small part.

"The Capacity for Patient Engagement: What Patient Experiences Tell Us About What’s Ahead", Healthcare Quarterly 21(Special Issue) December 2018 : 68-72. Please read other articles from this issue, as several are co-authored by PAN members.

What I write about is often invisible and hasn't occurred to people keen on involving patients. So this is a huge bias in recruiting and from the burden on volunteers. Compensation only addresses a small corner of this, as you suggest.

The burden of illness, demands of treatment and caregiver responsiblities all impose challenges that can be insurmountable.

Your voice will be welcomed on PAN Parle!

Best wishes to you and thank you for the sacrifices and contributions you are making for better health and better healthcare.

Carolyn

[A Former User]

Laurie, I just had to jump in on this question of privilege. I think as we unpack the experiences of partnering we start to see more and more in depth these types of issues beyond the obvious ones (at least to the healthcare world) of compensation.

I think the whole issue of privilege is a topic in and of itself. Maybe we should start a topic thread on that alone and down the road have a PAN Parle on the topic. The world of partnering must include all voices, the question is how. Recruitment is mostly a healthcare task to figure out but we have a huge role in identifying the real issues that prevent people from participating and some of the solutions. We can't expect healthcare to know how to go about doing this without our input and insights.

Looking forward to exploring this further. Cheers! Alies