Why is patient engagement in research important?
Patient engagement is partnership with patients and caregivers in the research process. Patient engagement is important because it is how people with lived experience of a health condition can impact decisions about what research questions are important to answer, how to do the research, and how to share the results with the public. Research is collaborative and the insights of people with experience of a health condition are just as important as those of the scientists, statisticians, and others on the research team.
How are patients and caregivers involved with the Institute of Genetics?
We invite patients and caregivers to contact us so that we can get to know and find the best ways to support each other. We also invite researchers wanting to increase the involvement of patients in their research programs to contact us should they want guidance and advice on how to best do this in a respectful and inclusive manner.
Patients and caregivers are involved with the Institute of Genetics in many ways, and we are always looking for more opportunities to work with, and hear from, the community. Some examples of how patients and caregivers have been involved with the Institute of Genetics in recent years include: serving on our Institute Advisory Board, reviewing grant applications for funding, informing the development of our activities, and speaking at our events.
Training & Resources
There are many wonderful resources to help with every aspect of patient engagement in health research. Below, we share some of the top resources that we recommend.
- Patient Engagement in Research Training Program
- Methods for Supporting Diverse Patient Engagement
- Patient and Community Engagement in the Design and Implementation of Research Studies
- Resources recommended by the Institute of Musculoskeletal Health & Arthritis
- Genomics England’s language guide for how to talk about people whose genetic information is used in research
- Patient Partner Compensation Guidelines
See something else that you think should be on the list? Let us know! Contact Jillian: email@example.com
Community of Practice
Founded in 2022, CIHR’s Patient & Public Engagement Community of Practice was created with the belief that involving patients and the public in decisions about health research is key to doing research that best meets their needs.
The Institute of Genetics is committed to meaningful patient engagement and hired a staff member to lead this initiative. As part of that role, the Team Lead for Patient Engagement organized a Community of Practice to bring together staff from across CIHR’s Institutes to discuss and further develop best practices around patient & public engagement in health research. This Community of Practice aims to better integrate efforts across the Institutes and branches, promote learning and best practice, increase cohesion of approaches, and reduce redundancy with respect to public & patient engagement.
Staff from various branches of CIHR are also involved in this Community to learn and help integrate this work across the organization. The Community is looking to create a sense of community among staff involved in this work. It held its first meeting in June 2022 and plans to meet several times per year to share, learn, and develop harmonized approaches.
IG’s Planning & Dissemination grants are a great way to secure funding for a variety of patient engagement activities. Deadlines are twice per year. See example call.
- Some examples of possible activities:
- Applicants can apply for funds to build a research team that includes patient partners.
- Applicants can apply for funds to co-develop and host a workshop with patient partners.
Do you have questions about what funding is available? Get in touch! firstname.lastname@example.org
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