This website was created by a the Patient and Family Partnerships Committee of the Canadian Critical Care Trials Group (CCCTG).  The CCCTG is a group of  Canadian researchers who work together to design and conduct their own studies to improve the care and outcomes of critically ill adults and children. The CCCTG has a 25+ year history of leading research that has improved the care of critically ill patients around the world, saving and improving lives. It has served as a role model for the development of similar research organizations around the world.

The Patient and Family Partnerships Committee was created to enable CCCTG to engage and develop meaningful partnerships with those most affected by critical illness — patients and families. Engagement gives a voice to patients and families to influence how research is done and how research results are used.

Our committee is co-chaired by a patient/family representative, and a CCCTG researcher.

To further CCCTG’s ability to engage with members of the public, patients, and families in our mission — to advance the care of our sickest patients through excellent research – the Patient and Family Partnerships Committee recognized a need for a portal through which individuals can contact us.

We recognized that although there are several websites to support patients and families who have experienced critical illness, there are few resources available to help patients and families who are being approached to participate in research in the intensive care unit (ICU) context.

Furthermore, we recognized that CCCTG did not have a way for patients, families, and members of the public to contact us if they want to be engaged or partner with us in creating innovative, patient-focused research projects.

This website was designed and refined with the input of patients, families and members of the public — to help provide support to patients and families who are interested in critical care research, either as research participants in a clinical study, or who want to work with our researchers to make sure that our projects are designed and conducted in a patient and family friendly manner.

This website includes a:

• Description of critical care, including stories from the patients’ and families’ perspective
• Summary of general information about research in the ICU
• List of questions to ask and consider when deciding whether or not to participate in research
• Description of what engagement is and specific activities you can engage
• Engagement portal so we can engage, share your ICU story and how you might like to be involved with CCCTG

Patients and families who are in the ICU, or have been in the ICU may be asked to participate in research studies. We hope that this information will provide you with the information to decide whether or not the research study is a good ‘fit’ for you and/or your loved one. Although often, patients are the subjects of research, studies may involve family members and caregivers as well.

Engagement goes beyond just participating in research— it means making your voice known and helping to create and share scientific knowledge to help patients, families and society. Engagement can take lots of time, or a little bit of time.

Here are some ways that you can work with CCCTG to make ICU research more meaningful:

• Let researchers know about the issues you think are important to study.
• Read over study documents like consent forms to make sure they are easy to understand for other patients and families. If you don’t understand something, ask questions about it.
• Provide input about study protocol and design.
• Help share study results.
• Tell your story and how critical care has impacted you or your family.

If you would like to engage with CCCTG, we would love to hear from you! Please contact us here!