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Canada’s Strategy for Patient-Oriented Research (SPOR) aspires for patients, investigators, health care providers and decision-makers to collaborate to build a better health care system. Patients must be meaningfully engaged as partners in health research to ensure the needs of Canadians are being addressed. This includes focusing on priorities important for patients and producing results that inform policy and are taken up to improve the health of Canadians.
This Patient-Oriented Research Collaboration Project was supported by the Canadian Institutes of Health Research (CIHR) and funding was also provided by the Ontario SPOR SUPPORT Unit, which is supported by the Canadian Institutes of Health Research and the Province of Ontario.
Decision aids are usually used by patients and healthcare providers to make treatment decisions together. These decision aids for patient engagement in research are based on healthcare decision aids and use the same type of format to help make a decision. Like healthcare decision aids, this decision tool is divided into five sections:
This decision aid is meant to help you decide if you are ready to be part of a patient-oriented research team. Reading and working through each section is meant to help you consider a number of factors related to patient-oriented research in clinical research, as well as provide you with links to other reliable resources and information. This decision aid will also be useful if you know you are ready to be on a research team, but want more information (e.g., about compensation, working in a team, etc.). This type of information is found in the Learn More section of the decision aid.
The Canadian Institutes of Health Research (also abbreviated as CIHR, the federally-funded organization that provides funding for health-related research in Canada) defines ‘patient’ as “An overarching term inclusive of individuals with personal experience of a health issue and informal caregivers, including family and friends.”
Patient engagement happens when patients meaningfully and actively collaborate in the governance, priority setting, and conduct of research, as well as in summarizing, distributing, sharing and applying its resulting knowledge (patients who are involved in any of these roles are defined as patient partners).
CIHR’s Institute of Musculoskeletal Health and Arthritis (IMHA) have developed training modules for patient partners, researchers, trainees, clinicians, and other members of research teams. See IMHA resources and training modules for Patient Engagement. Please note that you will need to create an account to access the patient engagement training modules.
Patient-Oriented Research is research where:
Below is some general information about clinical trials. You may also wish to visit Learn About Clinical Trials.
Clinical trials:
In this section there are some short videos about patient partners’ experiences on clinical trial and research teams as well as investigators’ experiences with including patient partners on their clinical research teams. Use Closed Captioning by clicking the “cc” once the video begins.
Being a patient partner on a clinical research team may be based on your own motivations and personal experiences. Some reasons may include:
You may also have other personal reasons not listed here.
These topics are discussed in much more detail in the next section, while here they are introduced to you.
It is best practice for your expenses to be paid as a patient partner on a clinical research team. It should not cost you money to be engaged as a patient partner on a clinical research team. Many organizations will book travel arrangements or make other 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 investigator on the team, and in the next section there is some guidance for you around some considerations and ways to approach this topic.
If you are considering being a patient partner on a clinical research team, it is a good idea to have a discussion with the lead investigator about expectations about time commitment and what best works for your in terms of your involvement in the project. The potential time required to be a patient partner on a clinical research team may depend on the length of the research project, how it is funded, and your role in the team. While the research team may have expectations about time commitment, these can always be discussed and negotiated.
There may be some potential benefits and risks associated with you being a patient partner on a clinical research team. These lists are not complete – you might think of other benefits and risks that are not listed here and that are important to you.
Potential benefits may include the ability to:
Potential risks may include:
The International Association for Public Participation (also called IAP2 for short) has created the table below that shows levels of participation that patient partners may have on clinical research teams.
Patient partners can engage as in five capacities, from the lowest level of inform (i.e., investigator makes decisions and informs the patient of study progress) to the highest level of empower (e.g., patients make the final decision in study progress and the investigator implements what the patients decide). It is likely that most patient engagement on a clinical research team will not involve these extremes but will include consultation, involvement and collaboration with patient partners. However, the farther right you are on the IAP2 spectrum, the more empowered patient partners will be to influence decisions regarding the study. Note: SPOR is seeking to move the level of engagement of collaborate and higher.
Depending on how and where patient partners wish to be involved in the project, involvement according to this spectrum may be ‘fluid.’ That means for different parts of the project, patient partners may be involved at a different level of the spectrum. Or perhaps as patient partners become more comfortable with the project, the team, and their role, again they may be involved at different levels of the spectrum.
Patient partners can engage in each and every step of the research process/lifecycle associated with each study. The level or spectrum of engagement, defined earlier using the IAP2 criteria, is a very useful tool for defining Patient Partner Roles and Responsibilities within a clinical research team.
Public Participation Goal | Promise To The Public | |
---|---|---|
Inform | To provide the public with balanced and objective information to assist them in understanding the problem, alternatives and/or solutions. | We will keep you informed. |
Consult | To obtain public feedback on analysis, alternatives and/or decision. | We will keep you informed, listen to and acknowledge concerns and aspirations, and provide feedback on how public input influenced the decision. |
Involve | To work directly with the public throughout the process to ensure that public concerns and aspirations are consistently understood and considered. | We will work with you to ensure that your concerns and aspirations are directly reflected in the alternatives developed and provide feedback on how public input influenced the decision. |
Collaborate | To partner with the public in each aspect of the decision including the development of alternatives and the identification of the preferred solution. | We will look to you for advice and innovation in formulating solutions and incorporate your advice and recommendations into the decisions to the maximum extent possible. |
Empower | To place final decision-making in the hands of the public. | We will implement what you decide. |
Sometimes it’s helpful to have a glossary with research terms for you to reference. The Canadian Institutes of Health Research has created a glossary of terms that may be useful.
This decision aid is part of an ongoing research project. Project team members include:
If you have any questions or comments about the decision aid, please send them to spor.decisiontool@utoronto.ca or call 1-833-543-4916.
Funding for the development and dissemination of the Investigator Decision Aid has been provided by the Canadian Institutes of Health Research (CIHR) (Application #397455) and the Ontario SPOR Support Unit (OSSU).