Patient Partner Compensation Policy and Procedures

Effective Date: February 1, 2024
Date to be Reviewed: January 31, 2025

Purpose

To provide information on the policies and procedures in place for patient partner compensation at Canadian Cancer Society (CCS). Compensation is one method used to show recognition and appreciation of patient partner contributions.

Scope

CCS staff should use this document when engaging patient partners in CCS activities. Patient partners should also receive a copy of this document when they contribute to CCS activities as experts so that they are aware of the compensation and reimbursement policy and procedures.

CCS uses patient partner to include both patients and public who partner with teams at CCS. By engaging patients, survivors, thrivers, caregivers, and families (collectively called ‘patients’ here) we can ensure people affected by cancer shape the way that CCS activities are conducted and maximize impact on people affected by cancer. Patients bring expertise from their unique experience and knowledge gained through living with or caring for someone with a condition or illness, as well as their experiences with treatments and the health care system. Engagement is the provision of this patient or public expertise to a project. This is different from volunteering, where the provision of patient or public experience may be valuable but may not be the primary contribution or focus of the role. CCS considers the following as core areas for engagement:

Partnering on governance and decision-making
Capacity development

There are different levels of engagement that can occur, such as informing, consulting, co-creating and leading initiatives. Engagement activities where compensation is encouraged will most often be forms of engagement such as co-creation and leadership of projects. While less involved levels of engagement such as informing or consulting on projects may also occur, those will more commonly be viewed as volunteer activities. This is also the case for one-time activities with a total contribution time of one hour or less, which may more often be viewed as volunteer-based to reduce administrative burden (exceptions can occur). For any engagement activity with compensation, this will be described at the beginning of the activity, for instance in an introductory email or a terms of reference document.

An overarching term inclusive of individuals with personal experience of cancer and includes patients, survivors, thrivers, caregivers, and families

CCS uses patient partner to include both patients and public who partner with teams at CCS. Patient partners should not be confused with research participants, otherwise known as study subjects. Patient partners are equal team members on a project.

Meaningful and active involvement in all activities including governance, priority setting, decision-making, planning, conducting research and knowledge translation.

Fair recognition and appreciation to a patient partner for their engagement in a CCS activity that is appropriate and reflective of the value of their time and effort. It can be in the form of cash payment, gift cards or in-kind exchanges or incentives. Compensation is separate from reimbursement of out-of-pocket expenses incurred to participate in an activity.

Repayment of out-of-pocket expenses incurred by patient partners related to their engagement in CCS activities. Eligible expenses include travel, accommodation, per diem meals as per the standard policies of CCS and caregiver expenses (such as costs incurred by a caregiver when taking time away from caregiving to participate).

1.1 - Guiding Principles

Compensation procedures and the rate of compensation is to reflect choice, respect, responsiveness, and transparency. It is important to note that patient partners represent a diverse population, and compensation procedures should recognize this diversity, which may require the procedure to be adapted to different circumstances. For more on Guiding Principles when engaging with CCS, see Being a patient partner –What you can expect.

1.2 - Payment Rates and Types Available

Depending on the type of activity, compensation is offered as either a fixed service income (hourly rate) or an honorarium (one-time payment); both of which can be paid in the form of cash/cash equivalent payment (e.g., cheque, gift cards) or in-kind payment (e.g. conference attendance).

Payment Rates
The hourly rate of CCS in 2024/2025 is $28. For work where patient partners have clear leadership responsibility, $50 per hour can be offered.
Payment Type
Fixed Service Income	An hourly or daily rate is paid to recognize patient contribution.
Honoraria	A one-time lump sum payment is made for attending an event or for participating in a short-term activity.
Cash or Cash Equivalent	Cash payments are offered in the form of a cheque/electronic fund transfer (EFT) or gift cards (if preferred).
In-Kind Payment or Gifts	In-kind support can also be arranged, such as access to CCS webinars, events or training for free, support to cover conference registration fees, etc.

*See Section 2.3 Payment Amounts for details on specific rates. Patient partners are encouraged to contact the CRA for information on taxation before accepting an offer of payment.

2.1 - Before Engagement

Patient partners should receive a copy of this policy and procedures document and have a chance to ask questions.
Patient partners should discuss, fully understand and agree to the payment being offered before beginning work.
Estimated minimum and maximum hours and responsibilities should be discussed. If any changes occur, another conversation should be held, and if necessary, payment should be adjusted.
Re-imbursement should be discussed with each individual and provided separate from compensation.
Patient partners should feel comfortable raising any concerns, suggesting their preferred forms of compensation, and refusing compensation if they so choose. Any concerns should be reviewed by their CCS staff liaison and a member of Finance and documented in our confidential Patient Partner Database.
Patient partners should know that the payment received for their engagement can be subject to relevant tax laws and regulations issued by the Canada Revenue Agency (CRA), as well as the province in which they reside and can potentially impact their finances.
All patient partners will have the option to waive the compensation offered. If patient partners waive compensation, they are still considered patient partners.

2.2 - Tracking Contribution and Processing Payments

Patient partners are responsible for tracking and claiming their own hours.
Patient partners will be consulted to set the frequency of payment, but patients are asked to submit their hours every 6 months to their staff liaison.
CCS endeavours to provide compensation in a timely manner – for instance, by asking for any hours logged to be submitted within two weeks of an engagement activity ending, and by processing payment in 5-10 business days once hours are received or once an activity has ended (if tracking of hours was not required).
Patient partners will have the option to customize the type of payment they wish to receive in order to avoid any negative consequences to personal financial circumstances.
Patient partners will be responsible for their own finances, and should keep the following in mind to inform their decisions regarding all offers of compensation:
- Any form of cash payment totaling $500 or more in a given year is considered taxable income and CCS will automatically issue a T4A for these funds, which may be considered income by the CRA. In this case, patient partners will have to disclose their Social Insurance Number (SIN). This information will be kept confidential.
- Canada Pension Disability requires disclosure of compensation above a specific amount which varies from year to year (recently $5,500).
- Compensation may alter the benefits status for individuals on disability or pension income.
- If a patient partner has a registered business, they will need to charge HST/GST for any work similar to their business.
To learn more about tax implications, visit the CRA website:

2.3 - Payment Amounts

Type of Work

Recommended

Other Costs to Cover

Meeting, Document Review or Other General Input

Attending meetings, preparing for meetings, providing feedback on documents or other content

$28 per hour.

For work where patient partners have clear leadership responsibility, $50 per hour. In the event that the work requires an increment of an hour, the full hour will be compensated (i.e., 4 hours and 20 minutes are logged, then 5 hours will be compensated for).

A minimum and maximum number of hours estimated for the engagement will be discussed and agreed upon in advance

Transportation costs. Accommodation (if out-of-town). Meals per diem (if out-of-town). 3 hours of travel time will be covered for patient partners who spend the day before or after a meeting travelling.

Any other expenses incurred related to the engagement (e.g. long distance charges, expenses incurred by caregivers taking time away from caregiving, expenses for a support person for a patient to participate).

Project-based Work

Participating in a specific project as a team member

Same as above.

Reviewer

Participating in research grant review as a panel member

Same as above.

Committee Member, Advisor, Or Facilitator

Participating in a committee on a council, or on a board as a member, advisor or a facilitator

Same as above

Same as above.

Presentation

Preparing a formal presentation and materials (e.g., slides) and delivering the presentation

$100 per presentation.

Same as above.

External Events

Representing CCS at an external event and reporting back to CCS (i.e. CCRC conference)

$100 for half day.

$200 for full day.

Same as above.

Registration fees.

2.4 - Patient Compensation Tracking Form

PDF fillable form version

Word document version