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

[A Former User]

This is a very timely topic. I just got a newsletter from the Wellesley Institute on Public Policy and they are doing a survey on this topic with a focus on the GTA - we should follow up on this this survey to see what the resulting guidelines might be. The following information is from the Wellesley Institute Newsletter ( Nov. 2017)

Paying research participants: what's the right amount?
Understanding people's lived experience plays an important role in developing good policy to improve health and health equity in the GTA. When conducting research, we often ask people to participate in interviews, focus groups, and surveys.
We ask them to make time in their lives to share often very personal experiences. Their contribution is vital. But it is not clear how this should be compensated.
Some people say we should not give people a wage for taking part and their contribution to research should be voluntary. But to ensure that everyone can participate we believe there is often a need for some sort of compensation.
We are launching a research project to try to figure out what fair research compensation in the GTA looks like. Our aim is to develop guidelines.
If you conduct social determinants of health or health services research in the GTA we would like to hear from you about how you compensate research participants. We would be very grateful if you could take part in this 5-10 minute online survey.

Jeanne Bank

[A Former User]

This thread seriously serves to reinforce for me the value of this network. Every organization is struggling with this topic. They are researching it and looking to see what other organizations are doing but the other organizations do not know what to do! Patient advisors are seeing the diversity across the system, as always we are the common denominator, and organizations keep coming to us to help figure out what to do. So, we are doing our job....challenging the status quo and changing the conversation

Clearly there is no "one size fits all" here. I agree with others that there are levels of engagement that require different approaches and perhaps a framework, similar to the Change Foundation or PCORI frameworks, is the best approach but I keep hearing that they do not go far enough. Do we need a more specific framework or do we use guiding principles created by advisors, for advisors? The reality is, that patient advisors do not and should not fit in a box...they are breaking out of the box and a compensation "framework" is another box created by an organization for the organization. They need a framework for consistency, to plan budgets and to avoid awkward conversations and the truth is, advisors do not like having the conversation either! The other reality is that every organization has budgets and perceived limitations and transparency around that might be a good opener to the conversation. As advisors, we need information, we don't know what we don't know. In my new role as Patient Partner at CFHI, applicants were asked to tell them what their salary expectation would be. I based my suggested range on the expectations of the role, my own assessment of the expertise I could bring and how it related to other roles within the organization. As a patient advisor at KHSC, I continue to volunteer. I bring my perspective and experience as patient and family member for the organization to learn from. My levels of engagement vary and my expectations of compensation vary...that requires conversations.

That said, if the onus is going to be placed on patient advisors to tell organizations what to do, we have a great opportunity, as PAN to support our members in participating in those challenging conversations...maybe it is time for those conversations not to be so difficult! As advisors we want to do "with" so deciding on compensation (in advance) should be done in partnership. It is so helpful to have other advisors sharing their experience and their guidelines. Perhaps a tip sheet for questions to ask around compensation and examples of good frameworks as they are developed would be helpful?

BTW....Gail's point around the "appreciation of the expertise" is really important as this evolves. One of our PAN members, Kerry Stewart, started a thread that suggests a project for PAN that would look at the "value" in a way the system might relate to....value as money. She articulates it well...hope you will check it out and share your thoughts with her.

As members find themselves being presented with new compensation frameworks it would be great if we could hear about them on this thread. The solutions will come from what we do best...share our experiences.

Thanks to all!

[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

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