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The general steps in the research process are described below. By clicking on the arrows to the left and right, you can see descriptions for each step of the research process. The research process is usually a cycle and while it often starts at “Identifying and Prioritizing,” patient partners can be involved in any step of the process, so it is presented here without a start and end.
You may find it helpful if there is more than one patient partner on a clinical research team. This may depend on you and your situation as well as your role on the team. Many patient voices on a team can help with diversity and commonality of lived experiences and also help to ensure balance so that no one feels over-burdened or out-numbered. Research is a process, and there may be a number of areas in which patient partners can play a role:
CIHR has principles for engaging patients as partners in research (including clinical trials):
The goal of the resources below will provide you with information to support meaningful and appropriate engagement in primary health care research in Ontario.
Here are some basic things you might consider about being a patient partner on the clinical research team in terms of communication, participating in meetings, and generally being part of the team.
Some basic guidance to follow around meetings and conversations include:
To learn some tips about meetings which include patients, the public, investigators and others, read Top Tips: Participating in a meeting.
Being a member of a research team might be new to you and including a patient partner on the research team might also be new to other members of the research team. This also means that you will learn and develop new ways to communicate with other members of the team. A few things you might consider in your approach to communicating:
Patient partner compensation in research and health care is a paper written by four Canadian patient partners. The paper outlines what you might consider with respect to expense reimbursement and compensation as well as how you might even approach the conversation with the principal investigator you are considering working with
It is best practice for your expenses to be paid as a patient partner on a clinical trials team. It should not cost you money to be part of the team. Expenses may include transportation, supplies, meals, conference registration, etc. Many organizations will also book travel arrangements for you so you are not out of pocket in terms of getting expenses reimbursed.
Sometimes compensation is provided to you for your time and expertise as a patient partner, and sometimes it is not. If this is important to you, this is a discussion that you can have with the main researcher on the team, and below we provide some guidance for you around some considerations and ways to approach this topic (if compensation is important to you).
A few things to consider about compensation:
There is little guidance about specific information on compensation of patient partners on research projects, but the tables below have been put together by the CIHR SPOR Chronic Disease Networks and include input by all stakeholders (including patient partners). Note that depending on your background, expertise, etc. these rates may vary.
| Time | Rate | Details |
|---|---|---|
| Hourly rate | $25 | For activities less than 4 hours |
| Half day rate | $100 | +/- 4-hour commitments |
| Full day rate | $200 | +/- 8-hour commitments |
| Commitment | Responsibility | Scope | Example of Activity | Suggested Compensation |
|---|---|---|---|---|
| Availability of email; willing and able to participate in a few meetings by phone or in person | Contributes advice and feedback for decision making by research team | Works within a specific clinical trial | In-person meetings will require expense reimbursement in addition to compensation | $500 to $800 per year, depending on number of meetings and other requirements |
To find additional information, refer to Learn About Clinical Trials.
There are other resources that provide you with basic information about clinical trials including:
You may hear the term Patient-Reported Outcomes (PROs) in clinical trials, especially when patient partners are part of the team and helping define a clinical trial’s outcomes.
Patient-Reported Outcomes (PROs):
You may be asked to provide feedback about your experience of being a patient partner in research to the clinical trials team. There are some surveys that have been developed to do this or you might be asked for informal feedback. You are encouraged to be honest about your experiences so that the team can improve upon their patient engagement efforts based on your experiences with the team.
As an example, there are patient partner surveys designed to understand the patient partner experience in the patient and researcher partnership:
Sex and gender are important to clinical trials. For example, some diseases affect one sex more than the other and learning more about why this is the case will help find better interventions for the disease overall. In the words of CIHR “To be truly personalized, health-care approaches must account for both biological and socio-cultural differences to determine how disease and drug outcomes differ for men, women, boys, girls and gender-diverse people.”
The terms sex and gender are often used to mean the same thing but they do not. We have included the definitions of these terms for you:
There is very little guidance on the topic authorship for patient partners within the purview of POR and the International Committee of Medical Journal Editors (ICMJE). A recent publication titled Guidance on authorship with and acknowledgement of patient partners in patient-oriented research provides guidance for patient partners and investigators on the publishing process, and also has a brief description of some key publishing terms and the process of publishing. Since writing and submitting a manuscript may be unfamiliar to you, this paper may be helpful. Guidance on what constitutes authorship and what constitutes acknowledgment is also provided.
