The audience for the Learn, Apply and Transform levels of the Resource Guide vary by the amount of knowledge and experience they have in engaging patients and communities in the design and implementation of research studies.
Depending on your knowledge and experience with PCE, you can self-select into an appropriate category to begin learning or expand your knowledge of PCE in the design and implementation of research studies.
This Resource Guide is tailored to any scientist, staff or trainee who wants to begin learning or expand their knowledge of PCE in the design and implementation of research studies. This Resource Guide is intended to support individuals without prior or very limited knowledge of PCE to those who have extensive knowledge of PCE and want to deepen their understanding.
Ideally engagement should begin at the idea and conceptualization stage of your research, but you can start engagement at any time during your research study.
“Research participants” are volunteers who elect to participate in a research study after they have given their informed consent. “Patient and community partners” use their lived experiences and expertise to inform the design and implementation of research studies.
There is no “correct” way to use this Resource Guide. We encourage you to use it in a way that appears to best fit your ongoing needs. You may start at the beginning and systematically work your way through or pick and choose the resources that are of most interest to you. Before beginning, we encourage you to identify what you want to learn and be selective. Also, consider finding a “buddy” to go through the Resource Guide with or creating a group-learning environment with colleagues who have similar objectives.
First, the Patient and Community Engagement in Research Committee (PCERC) brainstormed a set of objectives for each level. We started with searching the Internet and used keywords to compile a list of online resources to be matched with the objectives. The list was then reviewed and vetted by PCERC. They have also identified and invited expert researchers, trainees and research staff at Unity Health Toronto’s Research to review the objectives and resources in smaller group meetings for each level. Finally, the Resource Guide was reviewed by patient and community partners with experience in the design and implementation of research.
We hope to hold a few information sessions for our Research community following the launch of this Resource Guide. Details of these sessions will be advertised through the VPRI Update weekly newsletter. These sessions will be recorded and the recordings will be accessible to our Research community. Please stay tuned for more information. If you have any further questions, please email LKSKIresearch@unityhealth.to.
There are many reasons why you should engage patients or community members as part of your research team. When patients and community members are on your research team you have the opportunity to generate scientific findings that are more relevant to the priorities of patients and communities affected by the issue under study. Therefore, your work is more likely to have an impact and/or be taken up by relevant knowledge users. Many people believe that it is an ethical duty to engage patients and community members in research as they are the ultimate end-users of the knowledge generated by this research. Others point to the moral and social obligation of patient/community engagement in publicly funded health research. Moreover, the process of co-creating scientific knowledge with patients or with community members enables two-way learning—scientists learn about their patients or affected communities and community members or patients learn about science. The process of engaging a patient or community member to be part of your research team is not straightforward, thus we encourage you to engage with this set of resources created for the Unity Health Research community.
There is a perception that patient and community engagement in basic science is more difficult to do because it is at its early stages and can involve complex concepts. However, this research will eventually result in healthcare solutions that will have an impact on the lives of patient and community members. Engaging with patient and community partners can help determine the priorities and research questions that are relevant to patients and communities, bringing focus and context to your research. Innovative ways of engaging patients and community members in basic science are being developed.
Patient and community engagement should be integrated in non-clinical research such as health policy guidelines, core outcome set development and systematic reviews. Patient and community engagement will ensure that the outcomes that are important for patients and communities are considered in your studies and lead to an understanding of each others’ needs.
This is another area where researchers may question whether meaningful patient and community engagement can occur due to the complexities of methodological research. Patient and community partner’s input can contribute to developing different methods. Also, patient and community partner’s can offer a different perspective on how you interpret your findings and present them in a manner that can be understood by people who are not methodology experts.
It is important to put the proper support in place for a community member or patient to become a member of a research team. Providing these new members with information and resources to support them to learn about science and the research that your team is doing is only one step towards embracing a patient or community member onto your team. Building trust and properly acknowledging and adopting strategies to mitigate the power imbalance between academics and patients or community members is another key set of activities that research teams must be prepared to do. It’s also important to value the patient and community partner’s perspective and to have a contact person to help answer questions. The Resource Guides on patient and community engagement in the design and implementation of research put together for Unity Health Toronto’s Research community can help outline the reasons for and strategies to ensure equitable research processes.
