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

[A Former User]

I agree some compensation should be considered however the mix of groups we serve is so diverse it is hard to set values that all groups could deal with. After awhile of receiving nothing for your services and hearing other organizations are paying advisors it does make you wonder how much are you appreciated.

Trying to determine what kind of compensation should be paid needs to be determined individually but some group needs to take the responsibility to contact ALL groups and request them to look at paying advisors something. We advisors know the groups we are dealing with and their ability to pay a little bit from a group that doesn't have a lot of money will impact the advisor as much as a bigger amount from a well off organization.

However it is important that some form of compensation needs to be established since it is being talked about more all the time and could have an effect in the future of volunteer advisors

[A Former User]

Hearing Jennifer Johannesen speak recently on a panel I moderated at the Brain Child Partners Conference, I'm more confused on this issue than ever. Jennifer called out patient/family engagement as being just qualitative research with no ethics review and no proper compensation. She asked why we do it when there is no evidence to show improved research outcomes. So. I do think we need a framework and we certainly need a body of research to show us what works in engagement. But this discussion currently consists of mostly white, well educated people who are already highly engaged in health care operations, policymaking and research. Where are the unheard voices? Btw, I charge $1k for a keynote, $500 for panel speaker. But everything is pro bono if I am associated with the org (eg. on the board) hosting the event. For research, I have no idea if this is fair (it probably isn't), I charge 1500k per year for governing committee work or for co-authorship on the research team. The numbers go down from there for lesser roles (roughly same as CIHR guidelines).

[A Former User]

Wonderful post Angela. I am seeing more stories/scientific inquiries questioning the 'evidence' of the benefit of patient engagement. Metrics and quantifiable proof. I believe, therein lies one of the challenges of remuneration - prove to healthcare how patient engagement/patient advisors are improving/contributing to better quality healthcare before they pay for the expertise.

As trailblazers it means creating and collaborating, making mistakes and learning.

I think you are correct; we need a more specific framework, created for patient advisors by patient advisors.

Count me in!

[A Former User]

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

But the measurement we see is overwhelmingly system centric.

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

under 5% are outcome based

under 3% are patient defined metrics

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

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

[A Former User]

Here's another document about compensation

How do you compensate peers or people with lived experience?

Peer Payment Standards created by BC Centre for Disease Control

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

http://bit.ly/2FoSvvR

[A Former User]

Reviving this quiet thread to share this article:

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

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

[A Former User]

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

[A Former User]

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

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

[A Former User]

Mary Anne,

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

[A Former User]

Hi All,

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

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

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

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

To be followed!

Mary Anne

[A Former User]

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

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

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

Annette

[A Former User]

Annette,

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

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

[A Former User]

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

[A Former User]

Hi Alies,

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

Thank you

Virginia

[A Former User]

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

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

[A Former User]

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

[A Former User]

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

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

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

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

[A Former User]

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

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

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

Laurie

Sent via Groupsite Mobile.

[A Former User]

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

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

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

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

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

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

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

[A Former User]

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

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

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