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

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.

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.

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.

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

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

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.

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

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

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

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

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

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.

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.

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

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

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

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

Hello

i am happy to say i will be able to join in on the 28th. This is an important topic and not only is compensation essential but also to ensure patients are doing this for the right reason and not just compensation e.g. funds.

Looking forward to connecting.

Virginia

This is great news, Virginia! I'll look forward to hearing your voice.

It's my great hope that we can gather examples of excellent compensation practice from our members across the country. It's not hard to find poor examples. We should identify successful ideas that we can spread through our own networks in healthcare. Each of us can be a very effective vector for improvement and change!

In the past, I sometimes heard worries that patients might take on system level roles without a sincere interest in making a helpful contribution, just to make a little money. I've not seen that myself. People can arrive confused about what's expected. But we are all learning how to do this sort of partnership.

The key may be that increasingly we (patients, caregivers, etc) and professionals are truly seeing that this is work, and that it has real meaning for us as well.

In situations where there might be a worry about abuse, it would be pretty simple to ask candidates to state why this role is important to them and what they bring to to the task. That can open up a conversation to make sure our expectations are aligned with the healthcare professionals.

Our sense of reward also can take many non-cash forms: a chance to attend a conference, an invitation to speak, a role in promoting the innovation, access to learning, formal recognition and thanks in public or in healthcare circles, etc etc etc. I hope our PAN Parle session hears what you know about that's excellent and worth spreading.

We are all pioneers in a rapidly developing landscape for patient and public participation in system improvement. There are so many ways to get involved, and much more to come!

My experience has been all over the map over the past ten years as a patient advisor from point-of-care advising to national policy development.

I'm consistently paid for expenses. An honorarium is sometimes offered. It has ranged from $100/day for meeting time and $12/hour for prep time. Recently, I received a $250 honorarium, that I could have reassigned to a charity (this reassignment is also an option for the PA work in our health region). On one occasion, I received $1000 for a 20 minute presentation, participation on a panel and two day conference (the patient voice valued the same as all of the scientific directors who spoke). Typically, I am not paid for the presentations delivered. I've also been given small tokens, like a pen and paper for 50 minute presentations (universities). Recently, there's been an offer to cover any caregiving expenses.

All paid work becomes taxable income. That's an annoyance once tax season rolls around.

The amount of time that goes into preparation, travel, meeting time etc is considerable. But that is my choice. I can always step away and say 'sorry the timing isn't right' and that's largely acceptable. In most instances the accountability is somewhat different, and I value that. I'm retired and appreciate that choice. I feel I have benefitted from my involvement as a PA, as others have mentioned, and that is my compensation.

While I expect expenses to be paid, I do not expect any other compensation, but I graciously accept it when offered.

Having said all of the above, I have been out up to $1800 in my bank account for over a month, waiting for expenses to be paid out. This is a burden and definitely limits who can participate.

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

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