Researcher in children with disabilities
Annette is the lead for education at a faculty of medicine. She is also the research lead for a large patient-oriented research network on children with chronic diseases. The proposal for this grant gained strength when patient partners and other community organizations got involved early on in the project planning. Annette’s team is looking at how researchers can be supported when doing patient-oriented research and they are building a community of patient-oriented researchers. They hope that this will help other researchers to get interested in patient-oriented research. The network has developed a training program, peer mentorship, online webinars, a Citizen Engagement Council, guidelines for honorariums, and many other resources (e.g., newsletters featuring patient engagement initiatives). This group is always learning and changing as they find new ways to work with patients in research. They have noticed that when patients are engaged in research, it takes more time at the beginning to get projects up and running, but they expect that there will be greater and more meaningful outcomes for researchers and for patients and families. This network has a website with many interesting resources: https://www.child-bright.ca/.
- Measuring Impact of Partnership – AnnetteAnnette shares an example of how her team is measuring engagement in child health research
- Improving Patient Care and Experiences – AnnetteAnnette discusses how building a community of patient-oriented researchers can influence future research initiatives
- Impact on Research – Annette (2)Annette recalls that, in her project, engaging patients influenced how researchers asked questions.
- Impact on Research – AnnetteEngaging patients ensured that research questions were more relevant in Annette’s project.
- Looking forward – AnnetteIdeally, Annette would like to see patient engagement evolve from a community to a movement with real influence.
- Supports needed – AnnetteAnnette’s research group is developing tools and approaches for patient engagement training.
- Motivations – AnnetteBeing involved in patient engagement helped Annette reflect on her work and its intended purpose
- Advice to others – AnnetteFrom Annette’s perspective, clarity of roles is really important
- Valuing Contributions – AnnetteAnnette’s team developed a guideline with honorariums rather than hourly rates
- Developing partnerships – AnnetteAnnette’s team developed a tool to match researchers with families and children