For the purpose of Drug Reimbursement Reviews, a patient group is an organized group that represents patients with a specific disease or condition, or collection of diseases or conditions. Any interested patient group can provide input. We hear from small Facebook support groups and large national charities.
A group should have members that are patients, family members, or both; and groups should have a public presence such as on a website or on social media. Groups that represent patients and clinicians are welcome to contribute input. Patient input should focus on the experiences and viewpoints of patients, caregivers, and families, as described by patients, caregivers, and families.
Patient groups do not need to register with CADTH to provide input. As prompted in the template, we ask groups to describe their mandate, indicate their website (or social media name), and disclose any real, potential, or perceived conflicts of interest.
We seek input from patient groups, rather than from individuals, to have a diversity of voices and experiences. If you are an individual patient or caregiver who is interested in sharing your experiences, contact us at firstname.lastname@example.org and we will connect you with a relevant patient group. If there is no Canadian patient group for the disease or condition for which a drug is being reviewed, we will accept individual patient and caregiver input.
Patient groups from outside of Canada can submit patient input. Canadian patient groups can include perspectives and experiences from patients outside of Canada. In both cases, we ask that groups indicate where the perspectives come from, to help reviewers, expert committee members, and public plans understand their context and the health care setting in which the treatment was received.