Canadian Patient Partner Compensation Policy

This past year there has been a lot of dialogue around patient partner compensation.  It can be a thorny topic.  Mostly because it goes against the grain of what we would have considered volunteering.  But with the increase in patient and family engagement in research and health care there is merit in compensating patient and family partners.  You can read more about this in an article written by several patient partners who have had a breadth of experience in this area;  "Patient Partner Compensation in Research and Health Care: The Patient Perspective on the how and why".    

The article addresses many of the challenges of patient compensation and has some great fodder for patients and health care professionals alike.   Canadian Institute of Health Research has also developed Patient Compensation Guidelines that are widely used here in Canada.

What I want to discuss stems from conversations I have had with patient partners who are unable to 'earn' an income due to being on disability income.  Many of these patient partners have deep engagement and a true desire to help inform both research and health services based on their condition or experience.   Throughout most of the patient compensation guidelines I have read, there is always the CRA (Canada Revenue Service) caveat indicating that any compensation including gift cards may be subject to taxation.  For many, this is a deterrent and we are losing valuable contributions as a result.

Al Etmanski is the co-founder of Planned Lifetime Advocacy Network (PLAN) and has been a tireless community organizer.  Al has had incredible success in advocacy and successfully lobbied the world's first Disability Savings Plan.  I decided to take a page out of Al's book and see if I could create a framework for a Canadian Patient Partner Compensation Policy.  I see this as Provincially managed but Federally supported.

In BC, this could be led by BC Patient and Safety Quality Council through Patient Voices Network.  For anyone not familiar with Disability Assistance, it is financial and / or health support for those who have a Person With Disability (PWD) designation.  PWD naturally has an annual earnings exemption allowing recipients to earn up to a pre determined amount without it impacting their monthly Disability Income.  However, there is a ceiling and this is why patient partners who have a PWD designation and disability income are reticent of accepting and financial compensation despite the volume and value of their contributions.

I would like to suggest we start lobbying the Federal and / or Provincial Governments to create a Federal Tax exempt income for patient partners up to a pre determined amount similar to Disability Income.  The Canadian Patient Partner Compensation Policy income can surpass that pre determined ceiling but would then become taxable.

Organizations 'hiring' patient partners would be responsible for any T forms similar to current practice.  Now I don't profess to be a tax expert; if it isn't on Turbotax, I know nothing!  But I do see more benefits than not.  For one, patient partner compensation would then be a hard and steadfast line item that organizations can budget for.  This also lends to ensuring funders consider patient partner compensation when determining value of grants and the costs of research; a current gap.

The Canadian Patient Partner Compensation Policy (CPPCP) would also encourage standardization pay rates for patient partners.  According to Indeed, the average Health Care Assistant in our Provincial Health Services Authority (PHSA) is $32.80.   The CPPCP would not include or impede reimbursement of expenses like mileage, parking, travel, event registration or per diems.  It may be prudent to also cap projects at 24 months in length with transition models in place should project go longer.  And it would not be applicable for general volunteering like specific events, company volunteer programs, day of giving, etc. 

This is just a smattering of my thoughts and ideas and in no way is this a perfect framework but I strongly believe something along these lines could create equity and parity at the table and support inclusion of under represented groups and conditions.  Diverse voice continues to be a gap, one we are all working hard to reduce.

Curious others thoughts, ideas and perhaps, support to bring this forward to the powers that be for further discussion.