Resources for Patient Partners
By sharing their lived experiences, patients and caregivers can provide important input on preclinical research being conducted. Preclinical research is performed in laboratories using cells, tissues, or animals, and helps to inform decisions to move treatments into clinical trials (testing in humans). Preclinical research forms the foundation on which new treatments and interventions are built!
For anyone interested in getting involved in preclinical research as a patient partner, we have provided resources below that can help you to get started.
“It’s an honour to engage with the fantastic NPSP team. The values of the team encourage a multidisciplinary approach that drives ground-breaking research” – Marie-Maxime Bergeron
“I’ve learned so much from being involved with the NPSP that I never knew about pre-clinical research. The team has been great when me and other patient partners have questions about their work. This collaborative environment makes me feel positive about our future work together” – Laurie Proulx
Resources for Getting Started in Patient Engagement
Institute Of Musculoskeletal Health And Arthritis (IMHA) -
Canadian Institutes Of Health Research Patient Engagement training
This is a free, online, self-directed course consisting of a number of modules that aim to help patient partners, researchers, trainees, and others involved in research to do patient engagement in research. The course, available in English and French, was developed for use in all research areas, not just musculoskeletal health and arthritis.
Acknowledgement & Compensation Considerations
Patient partners provide important experience, insight, and value to research projects, and as such, many influential patient-oriented organizations have endorsed patient partner compensation practices to recognize these contributions.
At the outset of any patient engagement initiative, the research team and patient partner(s) should co-develop a plan to support and recognize the contributions of the patient partner(s).
It is the responsibility of the researchers to initiate conversations around compensation.
There are many ways for patient partners to be recognized for their contributions, and it is important to have transparent conversations with the researchers about any unique needs or preferences you may have. For example, discussing how you would like to be recognized, method of financial compensation (honoraria, gift cards, gift), and payment schedule.
Reimbursement
- Patient partners should not have to pay out-of-pocket to be engaged in research and should be reimbursed for any costs associated with engagement (e.g. parking). While the research team is responsible for anticipating any associated costs and planning for reimbursement, you should also feel confident and comfortable to discuss any considerations unique to your situation that may impact out-of-pocket costs (e.g. travel costs, child-care).
Honorarium
- In addition to reimbursement of any out-of-pocket costs, established patient-partner compensation practices recommend offering honoraria (cheques) to recognize the time, efforts, and contributions of patient partners.
- Accepting honoraria valued above a specific monetary amount (consult appropriate revenue agency for further details) is considered taxable income. Thus, accepting honoraria may have tax implications or jeopardize a patient partners ability to accept governmental social security support.
- In order to process honoraria, your address and Social Insurance Number may be required. In the event you don’t feel comfortable sharing this information, you can always discuss alternate arrangements for recognition with the research team.
- If you have concerns regarding accepting financial compensation, one possible alternative is receiving compensation in the form of gift cards to a retailer of your choice.
Co-Authorship
- Depending on the nature and level of your engagement with the research project, you may be offered co-authorship or acknowledgement in research manuscripts generated from the project. It is important to note that if you agree to a co-authorship or acknowledgment in a research manuscript, your name in association with the published manuscript will be made public. Being engaged as a patient partner does not require you to be a co-author of, or acknowledged in, research manuscripts if you prefer not to be.