Patient and Family Advisory Councils
We know that making a decision about a major surgery — or being the loved one of someone who making a decision about a surgery — can be stressful and overwhelming.
It’s important that we are sensitive to your needs and that we understand the patient and family member perspective.
That’s why Patient and Family Advisory Councils have been created at each of our five study sites.
Patients and family members of those who have undergone major surgeries participate in the Advisory Councils and guide us in our research. Currently, 18 patients, seven family members, and two people who have been both a patient and a family member serve on our Advisory Councils.
The groups will continue to meet throughout the study. They meet three times a year and discuss such issues as:
- Are potential participants approached in a way that puts them at ease?
- Are study documents easy to understand?
Advisory Council feedback has already been used to make major decisions about the focus and logistics of this study. For example, patient and family advisors helped design the consent forms and the information sheet used in the study.
You can see the imprint of their thoughtful hard work all over the study!