Research
Education
Basic Science Research
Clinical Research
Kelly Cobey, PhD
Scientist and Director Metaresearch and Open Science Program
The University of Ottawa Heart Institute (UOHI)
Karen Bouchard, PHD
Associate Scientist
University of Ottawa Heart Institute
Ann-Marie Julien, MA
PERSON WITH LIVED EXPERIENCE
N/A
Karen Bouchard, PHD
Associate Scientist
University of Ottawa Heart Institute
Ann-Marie Julien, MA
PERSON WITH LIVED EXPERIENCE
N/A
Karen Bouchard, PHD
Associate Scientist
University of Ottawa Heart Institute
Kelly Cobey, PhD
Scientist and Director Metaresearch and Open Science Program
The University of Ottawa Heart Institute (UOHI)
Ann-Marie Julien, MA
PERSON WITH LIVED EXPERIENCE
N/A
Workshop Description: Patient-oriented research refers to research that is informed by patients and emphasizes patient priorities. A defining feature of patient-oriented research is the involvement of people with lived experience – either directly as patients, caregivers, or as family and friends – as active members of research teams. The value of involving patient partners spans the research process, including grant writing, study planning and conduct, and knowledge translation. Actively engaging patients in research can help to ensure that the eventual research outputs are relevant and valuable to patients’ health .
Despite the recognized value and evidence for patient-oriented research, we know that most cardiovascular research does not engage people with lived experience. For example, in a scoping review, that identified 2100 randomly selected publications in 7 cardiovascular disease areas in 2023, only 5 (0.2%) mentioned patient engagement. The promise held by patient engagement in research is clearly not being realized across the research ecosystem.
This will be a practical workshop that targets researchers, people with lived experience, and research and healthcare leadership. Our goals are to: (1) provide a brief summary of the research demonstrating the value of patient engagement in the context of the cardiovascular sciences ; (2) share ‘lessons learned’ from the perspectives of those who engage patients in their research and those who have been engaged as patients; and, (3) introduce and discuss helpful tools and resources that support the meaningful inclusion of patient partners in research and quality improvement efforts. The workshop will equip attendees with a curated list of resources to enable the integration of patient partners across the research lifecycle.
Ample opportunity for participant engagement will be provided to delve into specific questions and areas of concern from the perspective of attendees, allowing for a productive exchange of ideas on how to avoid or resolve challenges. Through participation in these discussions by attendees the workshop facilitators will customize content to the expressed needs of the audience.
Together, the presenters will engage the audience to discuss advantages of including patient partners, some challenges and problem resolution strategies, and a planning tool to prepare for engaging patients in the work of participants.