Patient Partner Compensation Guidelines


CIHR Institute of Genetics (IG) supports research on the human and model genomes and on all aspects of genetics, basic biochemistry and cell biology related to health and disease, including the translation of knowledge into health policy and practice, and the societal implications of genetic discoveries. IG's core approach involves starting from patients and civil society, and working towards meeting research needs to improve health outcomes. This approach means that IG believes in meaningful inclusion and engagement of patient partners. "Patient partner" is an overarching term that includes individuals with lived experience, including patients, caregivers, family, and friendsFootnote 1.

This document outlines IG's compensation guidelines for patients and caregivers who contribute their time and expertise to IG's efforts (e.g., committees, working groups, etc.) or for patients and caregivers who are invited by IG to attend and participate in specific events (e.g., launch events, workshops, and meetings). These guidelines were developed for individuals who wish to be compensated, recognizing that not all individuals will wish to be. Payment for expenses (e.g., travel) are not considered to be compensation and are reimbursed separately.

These guidelines are meant to help start a conversation between IG and patient partners about compensation. IG values flexibility, equity, and inclusion in its approach to patient partner compensation.

Please note. Other institutes and branches of CIHR may use different approaches to compensation for patient partners.

Types of contributions

There are many ways for patient partners to engage with IG: providing input on specific projects or initiatives, attending meetings or events, speaking publicly, being part of a committee, doing media interviews, writing newsletter articles, and more. Some patient partners will engage in one-time opportunities, others may work with IG on an ongoing basis. Within the same event, patient partners may do different activities (e.g., attend workshop vs. give a keynote talk at the workshop).

Meetings and events can be held via teleconference, videoconference, and in person. For some meetings or events, materials may require review and preparation in advance. Other opportunities may involve independent work on the patient partner's own time, and reporting back to IG (e.g., writing an article or other document).

The contributions described here are not exhaustive – there may be other ways that patient partners will engage with IG that are not listed here.

What IG asks of patients and caregivers

Adapted with permission from Solutions for Kids in Pain.

What patients and caregivers can expect of IG




Honorarium rates for time and expertise for patients and caregivers

Note. All travel costs and other related expenses (e.g., dependent care) are reimbursed separately.

Activity Level of engagement Suggested compensation Examples
Commitment Responsibility and scope
One-time activity, e.g., media interview, write a blog post or newsletter article One-time commitment, plus any preparation required Invited to complete task or take part in a specific activity $40/hour for independent work If a media outlet requests an interview with a patient partner, the individual might spend 30 minutes with the reporter and an additional 30 minutes discussing the opportunity with IG to plan what they will say. Total compensation for 1 hour = $40.
Collaborator or working group member for a single, specific project (e.g., develop a tool for patients, co- organize an event) Availability by email; willing and able to participate in a few meetings Gives advice and feedback for decision making by team; contributes to a specific tool, product, or project $500 to $800 per year, depending on number of meetings and other requirements If a working group meets 4 times, for 1 hour each time, and the patient partner works on a draft document for one hour following each meeting and communicates by email ~once every two weeks for 6 months, compensation would be approximately $500.
Attend an event with or on behalf of IG One-time commitment, plus any preparation required Invited to attend or participate in a specific event

$250 for half-day event

$500 for full-day event

If a patient partner attends a workshop (e.g., to discuss opportunities for IG to further its work in patient partnership), the patient partner will have documents to review ahead of time, will participate in the event, and may provide evaluative or other feedback after the event.
Give a presentation at an event hosted by IG One-time commitment, plus any preparation required Invited to give a presentation at a specific event $500 for giving a presentation of 1-2 hours, including preparation time.

If a patient partner gives a presentation at a workshop, they will spend time in advance preparing the presentation, they will give the presentation, and they will participate in discussions.

Time spent attending the event will be compensated in addition, according to the amounts for half- and full-day workshops.

Member of a committee or working group with broader scope than a single project Commitment to a committee or group (includes meetings, follow-up actions, etc.) Participates in decision making by providing recommendations for a subject area or initiative with an institute-wide mandate $600 to $1800 per year, depending on frequency of meetings and volume of independent work outside of meetings. If committee meets once per month ($40) and members complete one hour of independent work ($40) per month, 12 * $80 = $960/year
Ongoing advisory role Advising IG on an ongoing basis (includes meetings, follow-up actions, etc.) Participates in decision making, mobilizing knowledge, liaising between IG and patient communities. $2000 per year assuming full participation – attending meetings and responding to other communications.

Expectation of at least quarterly meetings, with additional ad hoc meetings as needed.

Correspondence related to agendas, follow-up, and decision-making in between meetings.
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