Staff from Canadian Health Research Funding Organizations

Many Canadian health researchers are starting to see the importance of budgeting for compensation for patients engaged as partners for their time and expertise. However, there continues to be many obstacles to providing and receiving Patient Compensation. These challenges are typically shared through casual conversation and any possible solutions often do not consider the effects compensation might have on engaging people with diverse backgrounds related to equity, diversity, and inclusion (EDI).

People with diverse backgrounds may identify with one or more of the following (but not limited to):

• Indigenous peoples (i.e., First Nation, Métis, Inuk/Inuit),
• LGBTQIA+, gender diverse, and Two-Spirit community members,
  
• people facing housing insecurity or homelessness,
  
• individuals living in low income,
  
• members of a racialized community and BIPOC individuals,
  
• newcomers and first-generation immigrants to Canada,
  
• persons living with a disability,
  
• woman,
  
• any equity denied group as identified by you.
  

We want to learn more about these barriers and the impacts they may have on equity denied groups. It is our goal to learn what could be improved for compensating Patient Partners in health research through academic institutions.

We are looking to hear from Patient Partners with diverse voices, researchers, university staff and health research funding organization staff.

By participating in the study and sharing your experiences, you will help improve patient engagement and inclusion in Canada.

Your voice matters and we are ready to listen.

Patient

A term that includes individuals with personal experience of a health issue and informal caregivers, including family and friends.

Patient Engagement in Research

Involves patients being meaningfully engaged in a research project. Patient partners may help with things like:

• setting research priorities
  
• research design
  
• recruiting participants
  
• collecting data
  
• interpreting results
  
• writing reports
  
• sharing findings
  

The difference between patient partners and patients as research participants is that patient partners are engaged in the research process and inform and/or conduct the research. Patients who are research participants are instead part of the research. For this study, we are focusing on patient partners. (For more on patient engagement see the Government of Canada’s Patient Engagement Framework.)

Compensation

The act of awarding something to someone in exchange for a service. While this is often monetary compensation in the form of salary or stipends, it can also be in the form of services, honoraria, gifts or in-kind exchanges or incentives. Note that compensation is different from reimbursement for out-of-pocket expenses.

EDI - Equity, Diversity, and Inclusion

• Equity is removing systemic barriers and biases to let all individuals have equal opportunity.
  
• Diversity is differences in race, colour, place of origin, religion, immigrant and newcomer status, ethnic origin, ability, sex, sexual orientation, gender identity, gender expression, age, etc.
  
• Inclusion is when we ensure all individuals are valued and respected for their contributions and are equally supported.
  
• BIPOC is an acronym that stands for Black, Indigenous, and People of Colour

References

Canadian Institutes of Health Research

We are looking to speak with individuals who have any prior experience being a patient partner on an academic health research project. We are looking to hear about your perspectives on:

• Your previous experiences as a patient partner in health research
  
• Experiences in receiving compensation, including challenges, what works, and what does not work
• Possible solutions to overcome challenges to compensation
  

Who should participate?

Canadians (19+) who have been patient partners in academic health research project and who hold one or more of the following perspectives:

• Indigenous peoples (i.e., First Nation, Métis, Inuk/Inuit),
  
• LGBTQIA+, gender diverse, and Two-Spirit community members,
  
• people facing housing insecurity or homelessness,
  
• individuals living in low income,
  
• members of a racialized community and BIPOC individuals,
  
• newcomers and first-generation immigrants to Canada,
  
• persons living with a disability,
  
• woman.
  
• Any additional equity-denied group as defined by you
  

Why should you participate?

By sharing your experiences, you will help improve patient engagement and inclusion in Canada. This in turn will help improve outcomes for patients.

What would you be asked to do if you participated?

You will be asked to participate in either a virtual one-on-one interview or a virtual focus group along with other patients. This will be where you will have the opportunity to talk about your experiences on previous research teams and the compensation you received.

We are looking to speak with university administration staff and university finance staff to get your perspective on challenges to compensating patient partners and possible solutions from a university perspective.

We are looking to hear about your perspectives on:

• Your previous experiences compensating patient partners
  
• Strengths and challenges faced by your institution in compensating patient partners
• Possible solutions to overcome barriers and challenges to compensation
• Your perspective on how these barriers and facilitators could affect people from diverse backgrounds in becoming a partner on research teams.
  

Why Should you Participate?

By participating and sharing your experiences, you will be contributing to enhancing knowledge and understanding of the barriers and facilitators to patient partner compensation and EDI. This research will contribute to improving patient partner compensation and inclusion, which in turn will help improve patient-oriented health research, and ultimately outcomes for patients in Canada.

What would you be asked to do if you participated?

You will be asked to participate in a focus group on Zoom video conference along with other university administration and finance staff. The focus group will provide you with an opportunity to share your experiences with patient partner compensation.

We are looking to speak with academic health researchers to get your perspective on challenges to compensating patient partners and possible solutions from a health researchers perspective.

We are looking to hear about your perspectives on:

• Your previous experiences engaging and compensating patient partners
  
• Barriers and facilitators you have experienced in compensating patient partners
• Possible solutions to overcome barriers and challenges to compensation
• Your perspective on how these barriers and facilitators could affect people from diverse backgrounds in becoming a partner on health research teams.
  

Why Should you Participate?

By participating and sharing your experiences, you will be contributing to enhancing knowledge and understanding of the barriers and facilitators to patient partner compensation and EDI. This research will contribute to improving patient partner compensation and inclusion, which in turn will help improve patient-oriented health research, and ultimately outcomes for patients in Canada.

What would you be asked to do if you participated?

You will be asked to participate in a focus group on Zoom video conference along with other academic health researchers. The focus group will allow you to share your experiences with patient partner compensation.

We are looking to speak with staff members from organizations in Canada that fund Canadian health research to get your perspective on facilitators, challenges, and possible solutions, to compensating patient partners both as an institution and in compensation plans in funding applications.

We are looking to hear about your perspectives on:

• Your previous experiences engaging and compensating patient partners
  
• Barriers and facilitators you have experienced in compensating patient partners
• Possible solutions to overcome barriers and challenges to compensation
• Your perspective on how these barriers and facilitators could affect people from diverse backgrounds in becoming a partner on health research teams.
  

Why Should you Participate?

By participating and sharing your experiences, you will be contributing to enhancing knowledge and understanding of the barriers and facilitators to patient partner compensation and EDI. This research will contribute to improving patient partner compensation and inclusion, which in turn will help improve patient-oriented health research, and ultimately outcomes for patients in Canada.

What would you be asked to do if you participated?

You will be asked to participate in a focus group on Zoom video conference along with other funding staff members from other organizations. The focus group will allow you to share your experiences with patient partner compensation.

CAHSPR Poster: