Patient & Family Partnerships
The Patient and Family Partners Committee has been an active priority of CCCTG for many years. It has worked with investigators to develop best practices and promote the benefits of patient engagement in research, and has contributed to publications (for example, see: Patient and Family Engagement in the ICU. Untapped Opportunities and Underrecognized Challenges and Patient and family engagement in patient care and research in Canadian intensive care units: a national survey).
The Chair of the PFPC holds a position on the CCCTG Board of Directors. In 2023, Nadine Foster assumed this role, along with Co-Chair Dr. Lauralyn McIntyre (an intensive care physician from the Ottawa Hospital).
New initiatives are under development, and a new structure has been created, including an Executive Committee and the establishment of a broader Community of patient/family partners who are engaged in research.
What is the PFP Executive?
In addition to the Co-Chairs, the Executive includes an equal number of patient/family partner representatives and CCCTG investigators or research coordinators. It meets monthly to provide input to and oversight of activities. It also incorporates “Quick Consults” into the regular meetings (see below).
Who is the broader PFP Community?
The growing PFP Community connects people who are currently engaged in CCCTG led research as patients or family members of patients. The CCCTG has more than 300 members who are researchers, and there are well over 100 active research projects endorsed by CCCTG. Increasingly, people with lived experience as patients or family members in the ICU are working as valued members of the research teams to help inform the development and implementation of studies. The Community will be a forum for connecting these individuals, soliciting their input on PFP Executive initiatives and guidance developed by CCCTG, and to share opportunities for education, training and further engagement in research projects.
Who should join the PFP Community?
Anyone engaged in a CCCTG endorsed project or with a CCCTG member’s research group is encouraged to join. To do so, please email Mary-Ellen Rayner (mary-ellen.rayner@sri.utoronto.ca).
Information for CCCTG Investigators
How can CCCTG member researchers engage the PFP Executive and Community?
We have created two tools that researchers can use to solicit engagement and input:
Quick Consults: For investigators seeking patient & family partner input on a single, specific question
This short request form can be used by investigators if they are interested in obtaining input or advice from the PFP Executive on a particular study question. The information is provided to Executive members in advance, and the investigator is invited to join the next meeting of the Executive to discuss. About 15 minutes is dedicated to each Quick Consult. The Co-Chairs will provide a summary of responses to the requestor.
For investigators seeking patient & family partners for involvement in new projects
Investigators can use the short template below to share study information with members of the CCCTG Patient & Family Partners Community who may be interested in joining new projects. This approach empowers PFPs to initiate their own connections to investigators if they're interested in learning more or getting involved. These are shared with the PFP Community as they are submitted, or approximately monthly.