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

[A Former User]

I am a lay member of the Council of the College of Occupational Therapists Ontario. That is also considered Public Service and the per diem rate is $150. They also pay for prep time.

I have had a research team pay for my admission to a conference ($300) and also have access to medical journals from another researcher.

Most of what I do is not paid

Annette

[A Former User]

Ah, compensation! What a tangle this topic is!

Some of my patient activist colleagues feel that any compensation may corrupt with a conscious or unconscious message of "we won't pay if you offend us". Anyone on disability or social assistance may risk their status or undergo an audit as a result of accepting even conference registration. Some jurisdictions that have established compensation find that some people seem more moved by that paltry pay than the rewards of altruism.

From my point of view, being paid in gift cards is not appropriate: it is a form of retail advertising AND doesn't fit my lifestyle as a frugal person, untempted by Tim Hortons, Indigo-Chapters and Starbucks (my haul, so far). They become re-gifted where possible.

Now, what about compensation that reflects a gesture towards or actual assessment of value? Nearly all I do is unpaid: speaker, committee memberships, advisor, coach, instructor. Expenses are often covered, but surprisingly not always.

Becoming an unpaid faculty member in the UBC Faculty of Medicine included two big perks: the credibility that came with the fancy business card and (!!) library access. My department head advised me to always ask for financial compensation for invited work as an ethical matter. Then, how I respond is up to me!

I follow that practice of asking if there is an honorarium for all occasions when I'm asked to provide a service except where I know there's a policy of no compensation (strictly volunteer) or stated compensation.

My rule of thumb is that when I begin to look like a consultant or speakers bureau talent, then I should be compensated to the same degree. That's still a bit of a dream world. If I don't want to accept fair compensation, I should be able to make a tax-deductible donation to a fund to underwrite conference attendance for patient advisors, also in my dreams!

There's a great deal more to be written and discussed with PAN about this. What are your ideas concerning financial exploitation of volunteer patient activists who truly want to improve care?

Other comments?? Thanks!

[A Former User]

15 years ago, I was formally introduced to the healthcare system, not as a patient going for the usual annual checkup, but as a mother of a youth who seemed to be suffering from lack of motivation and pronounced moodiness. After playing healthcare pingpong for five years trying to get appropriate services, all the while watching my son deteriorate year after year into what would eventually be diagnosed as schizophrenia, a devastating and uncurable illness, I finally anchored us in a hospital and forged a link with a psychiatrist and a team.

So, after a 5 year internship dealing with the mental healthcare system, I became actively involved with the mental healthcare system in my role of caregiver/supporter/manager/mediator/coordinator of my son and his journey in receiving appropriate healthcare services since he was in no shape to do a lot of this for himself. My experience increased exponentially in navigating the healthcare system, decoding the way various government departments, community organisations and their personnel operated under the umbrella of mental healthcare. I did this alone, without any support and without any offering of support from any healthcare professional to direct me toward any resource that could support me or my son during this time. I was forced to give up my full time well paid job to manage my son's healthcare both in the system and at home.

In December 2011 a group of family member caregivers was invited by the program director to use a room at the clinic to meet with each other to share experiences, and to support each other in their journey with their youth affected by serious mental health concerns. In January 2012, I volunteered to organise such a group and facilitate bi-weekly group meetings. Members of the group soon realized (I did too) that I had a certain expertise with regard to organizing meetings, developing topics, finding caregiver resources, navigating the system, and helping others who were just starting out. After six months of volunteering my time, being asked by clinic staff to meet new parents, attending seminars, giving presentations, I decided being a patient/caregiver advisor was not a volunteer job, although most others, including a lot of family member caregivers thought it should be. Nevertheless, I wrote up a proposal and submitted it to the direction, asking at first to be subsidized for for my time and out of pocket expenses (about $500/month). I received a small grant to cover expenses only. After another six months of volunteering my time, attending more clinic meetings, seminars, giving talks, receiving calls at all hours of the day and night, meeting with parents, and talking about youth mental health to whomever would listen, I asked once again to be remunerated for my time (about 50 hours per month at this point). In March 2013, I received my first grant and since then I have never participated in any healthcare initiative as an unpaid patient/caregiver advisor.

I hope I didn't ramble on too much, but my point is this: Every time I organized and facilitated a family support meeting, took notes, followed up with parents, researched resources, navigated the system, I was providing service users with a service that perhaps did not already exist. Normally, service providers are paid. And every time I sat around a table to attend a meeting, conference, seminar, or workshop, with academics, clinicians, researchers, policymakers and community organisations, the people I sat with were all paid to do so. They brought their expertise to the table to discuss important patient/caregiver matters and they were asking me what I thought because they knew I had many years experience in the system as a service user/caregiver. So I brought my expertise too. Except every time I sat around the table, I was the unpaid volunteer, taking time from whatever part-time job I was able to rustle up while taking care of my son, in order to try to advance the cause of improving mental healthcare services. This didn't make sense.

My experience has taught me there are different levels of patient advisors. From the person who decides to volunteer time at the local hospital or board of trustees to give back to the community, to the person who develops a passion as patient advisor to proactively deal with trying to improve the healthcare system, to the person who develops an expertise in trying to improve healthcare for others, a spectrum of patient advisor positions exist. I also think that no matter whether some may only ever want to be an advisor on a part time volunteer basis while others actually turn advising into a career, there are certain criteria and qualities that define what is a patient advisor. This holds true for any way we identify ourselves to the world, whether it is mother, farmer, doctor, plumber. And as long as a person meets the criteria of patient advisor, they should not be discriminated against or judged, if they choose to, or even insist on, being remunerated for what they do.

In the end, I believe it is the definition of patient advisor that requires clarification and a broadening, so that everyone can readily understand what patient advisor means and what it may imply.

[A Former User]

Here's a paragraph from a David Gilbert blog. He's in the UK

http://bit.ly/2stn7JK

"Perhaps most importantly, we value our patient partners by offering them the NHSE recommended honorarium of 150 pounds per day for involvement in improvement or governance work. One of the keys to embedding this reimbursement policy is to have other project managers commit to matching my central pot of money, so they do not come to me ‘cap in hand' but build engagement resources into early project planning."

[A Former User]

This is certainly an interesting and creative way to deal with compensating patient partners. This practice is also starting to build momentum in Quebec. Patient partners are starting to be compensated for their involvement in healthcare initiatives of the institution or university. Furthermore, some countries actually have patient/caregiver compensation policy guidelines. I think this is an important subject that needs to be addressed and worked out concurrent with the increasing presence of patients/caregivers as advisors in healthcare, otherwise the risk is that healthcare institutions, agencies and organisations will not develop budgets in a timely manner to meet the need for adequate compensation, which may cause serious setbacks in the patient-as-partner movement.

[A Former User]

This is certainly interesting. I feel you are right that budgets for patient partners will not be priority. This I am not sure of how to approach. As patient partners we are also asked to help others patients. I have been asked to facilitate a chronic pain support group. I do not know if i will get much assistance from local healthcare system. How does this type of partnership work for others ? To volunteer is one thing but to have to spend ones own money to get to meetings, pay parking is another things.

Also looking into other names for support groups, any thoughts ?

[A Former User]

Since no standards for compensation have been established yet in this country, compensation and remuneration issues seem to be resolved on a case by case basis, on an individual, community or provincial level. I can only share my own experience about group facilitation. A few years ago, I was asked to, and I did volunteer to facilitate a family support group of families and carers of youth with mental health concerns. After a month of meetings I started to keep a record of my time, what materials I used, and receipts for expenses such as parking and gas. After a few months (3 or 4) I realized I was spending considerable time and money on facilitation. Although I enjoyed very much supporting other families navigate the mental healthcare system, sharing stories and brainstorming solutions some of the challenges they faced, I realized this was more than what I considered to be a volunteer job. So I made up a résumé of all I was doing, and included and little statement on expenses and then met with the coordinator of the department to discuss the possibility of being reimbursed for expenses and compensated for time. Long story short, I eventually was reimbursed for expenses, and later applied for a grant to allow me to facilitate family support groups on a regular basis. This whole process took some time (about a year) which also allowed me the chance to develop facilitation and peer support skills, a kind of internship, if you will.

I hope this helps!

[A Former User]

I have had the privilege of facilitating support groups through a few agencies and have registered as a volunteer for each. Having this designation allows me to participate without having to be concerned because the volunteer association(s) pays for all expenses such as parking and other expenses. This provides me with the opportunity to demonstrate how we, as patient and caregiver advisors, can contribute to the well-being of those under care. Many organizations are just getting into the concept of patient/family engagement and are not yet prepared to provide the necessary financial support, are keen to do so but do not have the necessary policies/practices to support the expenses.

My focus through the years has been to break the cultural barriers, which in my opinion, has a bigger impact on the issue being discussed then lack of funds. As a result, many folks are being compensated for the same work I did a couple of years ago for free and if I'm asked to participate once again, my rates are a bit higher than the others so progress has been made. An example is, as Chair of a hospital's PFAC, I was able to secure an operating budget for the Council and report back to Senior Managers on how we us those funds to educate our members, the staff and others. The downside is to ensure that members do not participate only for the money so this becomes a criteria for selecting new members during rotation cycles.

We need commitment from the Boards, CEOs and EDs in order to effect the change we need so if anyone has the opportunity to participate in Strategic Planning, Accreditation, and Board of Trustees etc. this would be the chance to effect change in the culture and open doors for others to follow.

It has been a challenging and sometime frustrating process but as long as I see progress, I continue to have hopes that Patient and Family Engagement and remuneration will become the norm rather than the exception.

[A Former User]

There is a great blog by Tessa Richards from the UK on this subject as a prep for a Tweet chat (sorry I missed that!)

[A Former User]

Yes, for a full report, see the discussion topic entitled...

Paying patient advisors: improvement, research, committees, teaching, coaching and speaking

[A Former User]

I think this is new(er) territory for most in HC. The norm has been that patients 'volunteer', but to Mary Anne's point, there are different levels of engagement.

I don't think there is a full understanding or appreciation yet of the expertise that patients bring to the table, because it is not identified on a piece of paper. As we are well aware, we possess man identified and yet to be identified skills, that will enhance and evolve the transformation of Healthcare.

I believe we will have to pioneers our way through this fairly unchartered territory. We have many the questions and I think it will be up to us to determine, develop and deliver the answers.

To Claude's point about 'participating in Strategic Planning, Accreditation, and Board of Trustees etc'., possibly, a Health Standards Organization Technical Committee on Patient Engagement (where ALL participants are paid) would be an excellent idea and one that I might suggest.

[A Former User]

I feel the operative word here is VOLUNTEER in regards to being paid. I have been an advisor for 15 years. We actually weren't called patient advisors we were just members of a committee and other than a couple gifts I have not been paid. I don't think advisors receive enough recognition but being paid is not it

A couple things come to mind when we start talking about paying advisors one being we all knew we would not be paid with the exception of expenses when we volunteered. Being able to be involved in the decision making and input in the group we are with was our pay.

Secondly by not being paid I don't need to feel committed to the hierarchy of the organization I am free to present my position on issues.

Third is how would you define what groups should pay and how much and who wouldn't as someone said above some groups can't pay and some groups would not exist if they had to pay.

I don't think or hope not that peoples involvement would not become a monetary reason for becoming a member of a group. I know Claude and myself and others could pick up a nice chunk of change if we were paid an hourly or daily rate for our involvement

[A Former User]

Hi Bill,

Welcome to PAN and the groupsite discussions! Sounds like you've got a wealth of experience from your many roles to advise the healthcare system on how to improve.

You are right, of course, on what "volunteer" means. For many like yourself, in fact for the vast majority of patient advisors, the work is happily sought without an expectation of financial compensation.

Broadly speaking, Canadians are proud of their healthcare system and want to support it on an altruistic basis. The reward for donated labor is contributing to better care for all. It's also nice to learn more about the system that will be there for us when we need it. Being paid might feel like taking away scarce resources for patient care.

Very often our motivation is a direct encounter with healthcare, either our own or that of a family member or close friend. Knowing intimately the importance of quality care is a powerful motivator to volunteer, whether our care was ideal or lacking. We may wish to "pay back" or "pay forward" for a time when care excellence is at the centre of our lives.

Many of us also think supporting accessible and excellent care underpins the society in which we are proud to live. That's distinguishes Canada culture from many others, I've learned. In some countries, healthcare is seen more as a matter of customer relations or legislated rights.

The differences amongst us about financial compensation for our labours, skills and time are very individual: our personal values, our experiences, our economic circumstances and the nature of the request. Other previous contributors to this discussion thread have spelled out dimensions for many of those contrasting views. I'm sure your convictions are widely held by many PAN members.

I've encountered criticism that many patient advisors share dominant ethnicity, retirement with pension income, stable health -- aka "the worried well". This is a demographic that is certainly overrepresented wherever I look. Many healthcare systems are seeking greater diversity, more typical of their patient base and more who are highly vulnerable to healthcare access, quality and safety.

You may have helped examine the invisible barriers that contribute to such bias in self-selection. One big element is when, how and where participation is expected. Another is compensation, both to defray expenses and to recognize value. It seems there are different expectations for participation in improvement, teaching, research and public speaking.

There are worries from the provider side, too: perhaps payment can become an incentive in itself? Perhaps pay reduces the dedication of the patient advisor? Perhaps paying some and not others introduces strife among advisors?

Do you see any situations when patient participants should be paid? Where does the boundary lie between volunteer team members and paid team members? Are there distinctions among roles like advisor, partner, team member, researcher, speaker, facilitator, representative, stakeholder, instructor, others?

I think we are just at the beginning in exploring these issues in Canada. I'm delighted you are part of PAN's discussion forum.

Best regards, Carolyn

[A Former User]

I can’t really come up with a situation where an advisor should expect paid a set amount. However I do feel that advisors could and should be treated better. A little pat on the back and a well-done can be worth a lot in value. Acknowledging
the advisors and what they have done as a group should be spread around the facility they are working in or a press release in the local newspaper telling the public of the value of the advisor [ the press release may also get you some interest from others
from other potential advisors] Another thing important to advisors as opposed to pay is to make sure they are listened to and there ideas are used in one form or another. You have likely figured out that I am very passionate about being an advisor and what
I have been involved with and I can say there are likely thousands of such people who feel the same way.

If pay for service is introduced to the advisor world I am afraid would we get people who might not get involved for the right reason. Right now it is quite obvious as to why we are there.

Bill Holling

Sent from Mail for Windows 10

[A Former User]

Hi Bill,
Yes, indeed. Following on from what you suggest as best practice is taking time for "closing the loop". That is, informing patient advisors (and the entire facility) how their participation contributed to the project (report, recommendation, event, protocol, etc) and what impact it made to patient care. If there isn't this sort of feedback and evaluation, then the engagement may very well feel like only "going through the motions" of patient involvement.

I'm in a situation right now that might illustrate the pay issue for you. I was invited to join a research project as a patient advisor. I had met with the principal investigator and suggested a novel approach on measuring outcomes from a patient perspective, so she thought I might play a useful role in the project. The proposal now has me written in as one of several instructor for five regional workshops and as a member of the advisory committee.

Of course, they will budget for my hotel and travel expenses. But will they budget pay, as they will for each of the other facilitator-presenters? Or is a patient session leader an unpaid volunteer by definition? The PI wouldn't dream of asking another researcher to run a session or participate otherwise in the project without pay. What is the principle at work here?

Have you or other PAN members found yourselves in this situation? It is not a black-and-white issue, that's for sure.

Cheers,
Carolyn

[A Former User]

I think the people who you are working with have really done a number on you. I just got done reviewing some grant proposals and I guess contrary to what I said about not being able to see when advisors should be paid I take that back with
a tag on it.

I do not see you with the label patient advisor in this situation you are a member of a research group . You are a an instructor, presenter and a member of the advisory committee to me you are a contract employee of the principal investigator
he is a benefactor of the results of the proposal and is paying the other people involved for their service.

I would politely inform him that you expect a per diam or hourly pay for the project based on the magnitude of the proposal and your involvement .

He has put you in an uncomfortable position but as I said you are not an advisor you are part of a research team

[A Former User]

Hello

I read the blog by Tessa Richards. i think it brings up many good points. Being paid may take away from what we do but expenses covered would be nice.

I am not asking to be paid I am willing to volunteer but find in the chronic pain communities there seems to be no place for me. They either have no one and not looking or have a small group they draw upon. But I find it interesting that I have been asked to facilitate a chronic pain support group.

I also find it interesting how there is massive amount of work for me in a chronic illness I do not have but am pleased to assist here.

I feel it can be exhausting offering.

[A Former User]

Another advisor heard from

Dana Lewis of the US and of #wearenotwaiting on Twitter

#WeAreNotWaiting to make the world a better place

http://bit.ly/2uUDFJr

"It's both an opportunity and a burden.

It's an opportunity to share your story, your perspective, and propose solutions and partnerships to make a difference now and in the future.

It's a burden, because no one person can represent everyone; it's a lot of work; and it's expensive."

[A Former User]

Good evening everyone,

I haven't had the opportunity to chime in on this topic lately and have read your many experiences, suggestions and comments for our Community. Thank you.

We all know that financial compensation is an issue and whether we accept compensation (which I am doing now in Alberta) or choose to volunteer, the issue will not go away. As mentioned in some of the comments, our time adds up quickly and before you know it, these hours turn into days. I too have had many of your experiences and will add my two cents worth (hang on, it's gonna have to be a nickel, pennies have been discontinued).

Starting at the beginning of the post, Alies mentions that the new members of the Minister's PFAC will be compensated $150/day for their contributions. I applied to be chair and also a member of this Council and had I been chosen, I would have gladly accepted the payment but $150/day for one meeting, it is progress and yet, not enough. I was particularly pleased to see that preparation time is also included in the remuneration benefits. Australia has similar types of Government committees and programs and some pay $650/day, equivalent to the average salary of those who are Service Providers, Government employees and consultants and expenses are covered.

Bill made a great comment about volunteers, in the first 5 years of forming a new Client Empowerment Council, I provided almost 4,000 hours of time and effort and the benefits surely outweighed any financial compensation I may have received. I also agree with that being a volunteer does not tie me into any organization and as intimidating as it was at times, volunteering protected me to speak about issues in a free and open manner. Volunteering is part of my healing program and I have benefited physically, emotionally, mentally and spiritually. So although I do ask for compensation for my work as an advisor, I continue to volunteer as an advocate and hope to continue this for life. This is where I drew the line.

For clarity purposes, I define advisor as someone with specific skills who are engaged in policies, planning, legislative and decision-making. (Paid) I have had many senior mgmt type people who contact me with a specific question or issue and I act as a consultant. I define advocate as someone with similar experiences that speak for those who are not able to speak for themselves, whether at the care level or on committees, workgroups etc.. (Volunteer)

I concur with the quote Annette mentions in her comments:

"It's both an opportunity and a burden. It's an opportunity to share your story, your perspective, and propose solutions and partnerships to make a difference now and in the future.

It's a burden, because no one person can represent everyone; it's a lot of work; and it's expensive."

During the early years, there were not many of us at these tables so as to not waste an invitation or the opportunity I join. I often found myself lacking in details on the particular issue so rather than walk away, I sought out those who do have the experience and ask them what they would like for me to pass along. Better yet (and I've been pretty successful in this), I encourage the person to join me until they feel comfortable enough to speak for themselves. So what does this have to do with compensation? Nothing and everything. From my perspective, the idea of having someone with lived experience be paid to attend was unheard of and now, it's one of the first questions we ask. Progress is slow but it does move forward. The two biggest barriers I faced was overcoming the feelings of being intimidated by those at the table and living with a diagnosed mental illness and the stigma that comes along with that (I have many stories of being stigmatized but that for another day - or even if there is interest, a new topic for our group.

Carolyn says:
There are worries from the provider side, too: perhaps payment can become an incentive in itself? Perhaps pay reduces the dedication of the patient advisor? Perhaps paying some and not others introduces strife among advisors?

During the last year of my term as Chair of a patient council, the members asked that we approach the organization for compensation. We discussed this many times at our meeting and when consensus was reached, I met with the CFO. I did not agree with the proposal but as Chair, it was my duty to bring it forward. My reasons for not agreeing are our members were volunteers and we received many benefits from the Association to support our work. Volunteering also made a big difference in their mental well-being.. But, being the selfish person I am, I wanted to hang onto the goodwill that volunteering provided me with and as I've shared many times, I have never been so healthy (mentally) as I have been since I began this journey of advisory and advocacy. This makes me the best paid person at any table. So we were given the choice of receiving the payment or continuing as volunteers. To my great surprise and satisfaction, 15 of the 22 members remained as volunteers. Some refused due to the restrictions of receiving any payment while on social assistance, others because they were receiving private insurance benefits and could not accept the money and the remainder because of their commitment to volunteering. But for whatever reason, there seemed to be a greater enthusiasm in our meetings and the conclusion I came to was that we felt respected, regardless of whether we were being paid or not. The biggest challenge we had was that 9 of our member terms were due so we recruited new members and all they seemed to be interested in was the money. The agreement for payment was for attending the monthly meeting prepared and they also had to meet or be in contact (via email) with their program manager. Compensation was refused when these conditions were not met and it did cause some strife in the group but we managed to deal with it. We had a clear policy that each member signed as "read" and were consistent in our decisions.

So my position for compensating members of any PFAC is, expenses are covered, resources are provided and volunteering is the way to go.

Carolyn also asks: "Do you see any situations when patient participants should be paid? Where does the boundary lie between volunteer team members and paid team members? Are there distinctions among roles like advisor, partner, team member, researcher, speaker, facilitator, representative, stakeholder, instructor, others?

I have been compensated many times for my work, as long as it does not pertain to my role on a Council or the Council itself. I have made 8 presentations on building a Patient Council at conferences throughout Canada and once in the US and when asked to submit an abstract, it is clear to all parties whether I'll be paid or not. Most of the conferences also paid for the expenses and included participation in the conference, not just my presentation. One though did not agree and we hammered out an agreement. I tripled my fee, included the expenses (airfare, hotel etc...) and they ended up paying me more than they would of if that had agreed to my original proposal. (I use this as an example of waste when this issue comes up). The ironic part of this story is that by the time it was my turn on the panel, I only had one minute to speak because the previous panelists went on too long. The organization tried to get me to reduce my fee but presenting is the easy part. The preparation takes hours and regardless of the length of my talk, my fee remains the same. They agreed to pay me (I wonder if I had been a researcher or CEO /ED if I would have had the same problem but I doubt it). After this experience and monitoring the agency to determine whether they were sincere in their engagement strategy, I have decided to no longer participate in any more of their conferences or events. This was tokenism at its worst.

Here are examples of when I ask for payment for services:
Conference panelist: $250.00
Conference speaker: $500.00
Keynote Speaker: $1,000.00
Public event panelist: $100-200 (depending on the rganization)
Public event speaker: $200-250 (depending on the organization)
Research team member: $40/hr
Policy and Planning: $50/hr

These numbers are all negotiable and act as a template for determining my rates. The only distinction I make between volunteering and getting paid is choice.

Conclusion:

I believe that this will be resolved in time and compensation will be automatic (for those who choose) but it needs folks like you and me to continue to have the conversation. This is also a great opportunity for PAN members to draft and eventually publish an opinion (and in our case, it would be a national position) and be part of the solution. It would also demonstrate to Patients, Families and Caregivers wanna be's that they are not alone and have resources to help them become engaged citizens. Is this in our mandate?

The time to unite is now!

[A Former User]

I love this discussion! This topic of compensation remains fluid. I think Claude you have highlighted some key elements.

Participation on councils: I am on several councils and do see this as voluntary advisory work. It is also less demanding than much of what else I do. There are usually clear Terms of Reference so the scope, duration and commitment is clear.

Speaking: I am often asked to speak or deliver webinars on patient engagement topics, particularly in the research area. For many of these I receive an honorarium. This feels right to me especially in terms of the volume of work and level of expertise required beyond the lived experience.

Consulting: I have from time to time (rarely) done consulting to organizations about patient engagement. This feels like regular consulting work and has been paid as such.

Partnering in Research: This one is more complex. I am currently on 6 teams and paid on 2/6. Again, this feels right at this stage because of the level and amount of work required. In these cases it goes way beyond recounting my experiences in healthcare. To my mind, partnering in research is quite demanding, of a long duration - often 3-7 years - and time consuming in spurts. I do feel this should be compensated and CIHR agrees.

I think the concerns raised about the value of contributing as a volunteer, difficulty in accepting funds if on assistance and so on are pertinent. I don't see an easy answer but as we talk, certain elements come clearer. And this will probably change over time. I don't believe patient engagement should ever become a career per se but that is my own thoughts.