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

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.

Good to know about NL SPOR grants, Susan. Thanks.

I am finding the work we are expected to do as patient partners becomes more sophisticated and demanding as we get known. And then there is the PAN factor: we are now being asked to partner for money on consulting primarily on patient engagement or aspects of same.

It seems to me that the healthcare world is recognizing the need for compensation and the value patient partners provide -- mostly.

At some point it would be great to have a PAN working group look at doing a set of recommendations or guidelines. I can't take this on personally as I am drowning in commitments currently. Is there anyone who is interested in leading this? Or participating if someone else is leading? Alies

I like Carolyn's idea of identifying best practices and some basic guidelines or principles. I have been involved with consumer involvement in standards work for over 25 years and this is an ongoing discussion without any clear solutions or even understanding in many cases. I do think health care has a real potential to establish some leadership in this area. My only caution would be that about 15 years ago the environmental community set out very strict rules around paying for participation and in my opinion it back-fired. As a result their voice is not usually part of the development process even though the door is open. So, my suggestion would be to build on success and be flexible. If you do decide to form a working group, I would be happy to participate.

Jeanne (lived experience member on HQO standards committee)

I have been at this for 12 years and received an honorarium a couple times in 12 years and very little recognition beyond that. As more and more is expected of the advisors I feel it is time for something. I didn't start doing this for pay or recognition but time, research and knowledge has made it a bigger challenge. I am about to start retiring from the health care volunteer world it is time but I feel to attract I feel some incentive besides pride needs to be looked at

Bill Holling

Bill, I'm sorry to see you leave the advising world but certainly understand it can take its toll and for all of us there comes a time to leave. Thanks you also for you thoughts on the topic of compensation.

Jeanne, let's see who else is interested who can join you in a working group on this. We'll keep track of who expresses interest and get back to you. Thanks for your comments. Alies

Hello

I too never got into this for compensation but feel we should not sprending money out of our own pockets. Asking for financial assistance can be a challenge.

I feel developing a document to suit all lived experience advisors needs will be a challenge and may be a working document.

Keep me the loop and will try to assist.

virginia

Great, Virginia. Thanks for your interest. We'll see if there are others who would like to work on this and get back to you. Alies

Hello

If you come up with a group please let me know I will help if I can ( I know I'm retired)

Bill Holling

Thanks, Bill. I'll pass your name along. Alies

Hi

I thought I would share this experience, which was novel for me. I am very reluctant to talk about money and compensation so it's taken me time to get this point.

An opportunity was sent to me by a Council that I am part of asking for a volunteer to be on a panel. I know something about the topic so I stuck my neck out and called the contact.

We had a good discussion, and I acknowledged that the panel was presented as a volunteer opportunity, but then pushed back (nicely) pointing out that the other unpaid speakers had career and professional interests that were enhanced by their participation as unpaid speakers while I was not in the same position.

Certainly not rocket science, but it helped to get the subject on the table and they are considering payment now.

After all it's not as though these opportunities do not involve preparation and inconvenience.

Annette

I am new to all this. One of my issues is that I am on disability, don't drive, and live in a rural area. I have a meeting at the hospital on Wednesday, it is going to cost me $50 or so in train fare. It may not sound like a lot, but it is to me. And, because of the time of the trains, I will not be home for lunch or supper. I think the opportunity to claim travel and perhaps a per diem/meal allowance should be available. I'm not looking to get rich, just to have out-of-pocket expenses paid.

And if there is a working group forming to look at guidelines, I would welcome the opportunity to be part of it - remotely, if possible.

Hi Jeanette, welcome to this new role. Please be assured that you are not alone in facing financial stress in participating. No question that your provider partner should cover the expenses you incur to come to their location at a time convenient to them to contribute your advisory insights and knowledge as a healthcare system user.

Have you opened a discussion with them about your requirements? It would be my guess that coming from a rural area and having a disability gives your participation considerable extra value, because patients like you all face these very same extra barriers for interacting to receive care services from the provider. They need your viewpoint --and must know it.

You give your time freely. Covering expenses is a first principle of partnership, so they should not be surprised by your request. You will likely have to provide receipts for travel and meals, but this is normal!

Is there more information you would like? Here is a link to the May 27, 2019 (new!) paper on patient partner compensation for research participation from CIHR (Canadian Institutes for Health Research):

"When an organization offers to cover expenses for participation in an activity such as an event, conference or workshop, this refers to paying for, or reimbursing, costs associated with a person’s participation in the activity (e.g., travel to the event, fees to participate in the event, hotel accommodations or covering meal costs). While covering expenses is one way to remove barriers to patient participation in research, it does not fit the definition of payment in the sense this document seeks to highlight." LINK

Your engagement might be on a Patient and Family Advisory Council (PFAC) where there is plenty of experience over many years across the province to guide the provider. If you run into problems, you could write to the Chair of the Minister's PFAC, Julie Drury at patientengagement@ontario.ca (also a PAN member!).

Let us know how your request is handled for other PAN members to learn. Your contribution is really important for all people who have access and disability challenges as patients in your area. Thanks for posting your question. Best wishes for success.

Warm regards, Carolyn

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