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

[Carolyn Canfield]

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

[Alies Maybee]

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

[Virginia McIntyre]

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

[Carolyn Canfield]

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!

[Kim Neudorf]

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.

[Alies Maybee]

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

[Jeanne Bank]

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)

[Bill Holling]

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

[Alies Maybee]

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

[Virginia McIntyre]

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

[Alies Maybee]

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

[Bill Holling]

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

[Alies Maybee]

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

[Annette McKinnon]

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

[Jeanette Smith]

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.

[Carolyn Canfield]

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

[Brenda Andreas]

Hello I’m going to weigh in. As a patient partner in our provincial health authority we have a two tired system. Some of the former health regions provided ah honoraria while others did not. Two years into our amalgamation we continue to struggle with this issue and have consulted many stakeholders on the topic. At some point we will have one policy. Expenses are always covered. To date I have not accepted a honoraria because I believe no matter what your circumstances are it is yours to accept or decline.

For work with partner healthcare organizations I have accepted a honoraria simply because of my own beliefs. I won’t accept an honoraria from where I receive my direct care...just personal to me.

What I feel we as a group should tackle is where we receive no compensation when the work/product generates income/profit for an organization. I was caught between the benefit I got related to personal knowledge development from tackling the project (writing a chapter in a text book) with the recognition received from it being published. Countless hours were spent completing the project.

[Carolyn Canfield]

Thanks Brenda for sharing your experiences and insights. You identify a clear case of unfairness where others are benefiting financially from patient partnership without sharing in the return.

This highlights the importance of clarifying expectations held by your partners and yourself before jumping in.

Sometimes, the host organization and personnel can't anticipate how far or how successfully a project will go. In the case of writing a book chapter, income from its publication would be considered likely or certain.

So that is information that was simply withheld... unfairly! I hope you felt able to express your concern about that unequal treatment, so the host group could learn better practices for next time.

It's also a cautionary tale for each of us to learn in advance about exactly what is expected of us and what our host organization believes is our compensation for that commitment. Compensation might be learning, as you suggest. Or perhaps representing the project with the team at a conference. Or perhaps financial compensation for the time and energy contributed.

I believe that the more often we raise the topic of compensation with those who invite us into partnership, the greater is the service we provide to learning healthcare organizations, their professionals, and fellow patient advisors who follow us. Everyone will gain with an easier conversation about compensation fairness.

Someday we will look back and find it quite amazing that patient advisor compensation was even an issue!

Best regards, Carolyn

[Denyse Lynch]

So much to reflect upon and learn from all of you. Thank you.

My share on Being Compensated for PA work stems from an organizational HR perspective for those of us interested and/or passionate in contributing to health care improvements.

There are companies that exist to determine "compensation & policy" concerning it for organizations. Compensation is a field and business on its own and there are companies devoted to & hired by organizations to assist them in determining what to pay people for their work. They also assist in defining what work skills & competencies are required for all jobs in the organization. They also develop a range of pay/compensation scales for various job competencies/responsibilities in an organization. Doubt the health system has done this consistently for PA roles, except maybe for a few engagement positions.

That said, while PA's are not employees, we are the needed/mandated/engaged "expert" providers of our information, knowledge, experiences. We, alone have the other half of the equation that enables the health system to ID the gaps, barriers, what needs to be kept, eliminated, reconfigured and provide improvement suggestions. This happens through our stories and more so with P.A.'s in-depth relaying of benefits, consequences, risks to patients, caregivers, medical professionals and the health system. This PA service knowledge work in engagement with the health system initiatives is still very much in "start-up" mode. Their set up for compensating PA's is not formalized, promoted, nor advertised. There are cases, here and there in various health system "silos" some compensation offered. Again, there is a consistency issue. For most PA's we have been requested to provide input and are acknowledged as volunteers. And, this approach worked initially.

Now, as I see from many PAN members' feedback, based on our short PA work history, what we are/have been requested to do, the amount of time needed from us, the nature, complexity of the health initiative, the skills, competencies, knowledge of those leading the engagement the "volunteer" approach is not satisfactory to everyone. We know the additional skills, knowledge, information, wisdom, literacy and varied perspectives we contribute have quantifiable, quality benefits and value. Some feel there should be compensation for this value contribution.

PA's add is a wide variety of skills, competencies, knowledge (necessary for the work) we use in the initiatives. E.G. communications, i.e. reading, writing, speaking, listening, presentations, teaching, researching, managing differences, providing constructive feedback, problem solving, creative, innovative. Many PA's are very skilled, health literate, language literate, possess skills for collaborating, facilitating, how to conduct/participate in a meeting, availability, time management, aware/use of emotional intelligence, to name but a few competencies we possess. The information about our health care experiences AND our skills, competencies, knowledge, ++++ that contribute value and I believe the health system realizes they are receiving. If we did not provide value our engagement would end with providing our stories.

The issue of compensation, contribution is influenced in our P.A.'s thinking through:

What we can we comfortably contribute: i.e. what current personal responsibilities towards self, others do we have? How about our emotional strength, health wellness? Time availability? Participation method, technology required? Do we have financial resources for travel/expenses and What skills and level (depth,breadth) of skills/competencies will complement the project's objective and achieve its objectives in timely fashion? Can we obtain the skills/competencies if we want to? How? From whom? This is part of my own checklist when considering a call for participation.

Of course I have many more questions about the project itself, which I learned to ask when I realized not all project leaders, facilitators use Best Practices in P.A. engagement. I've been enthused, had expectations, assumptions initially which I did not clarify or inquire about, because I felt I would be advised by the leads early in the project. It took a couple of meetings with 2 projects for the lesson to be learned when I did not inquire about, or verify before accepting the engagements. It felt awful to opt out as a result. Lesson was "duly" noted :)) !

For now the onus is on all of us, as P.A.'s to ask as many questions we can about a project being as specific as possible about our role, the project, objectives and our expectations when questioning the what, how, where and why of our involvement. Then, with this knowledge which I need to make an informed decision, I can choose to volunteer or when my work, skills, knowledge, competencies & nature of the project require compensation.

I deeply respect and feel it very important we each consider our own circumstances, nature of the project and if compensation is one of our requirements. Travel & expenses which we incur as P.A.'s MUST be "ALWAYS" compensated!

Then we need to do what works for us. Sharing and consulting with each other by offering perspectives, knowledge will enable us to continue to evolve....there is continuous learning and improvements to be made by all stakeholders.

Let's keep learning & reflecting. Best - Denyse

[JoAnne Mosel]

Terrific synthesis of the issues. Thank you Denyse!

[Denyse Lynch]

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 :)))

[Carolyn Canfield]

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

[JoAnne Mosel]

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.

[Denyse Lynch]

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

[Lelainia Lloyd]

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.

[Lelainia Lloyd]

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.

[Denyse Lynch]

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.

[Judy Birdsell]

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!