The Canadian Agency for Drugs and Technologies in Health (CADTH) Common Drug Review and pan-Canadian Oncology Drug Review programs incorporate perspectives and experiences from patients and family members who might be affected by the resulting funding recommendation. Perspectives are provided by patient groups who use different approaches to gather patient input.

We analyzed a random sample of ninety-three patient input submissions, drawn from a sampling frame of 532 submissions given to CADTH between June 2010 and June 2016. We looked at how groups described their information gathering methods in the original submissions or the published Clinical Guidance Reports.

Approaches were categorized according to whether they involved primary (n = 86) or secondary data collection (n = 130) and further sub categorized according to how data was collected. Primary data included: personal experiences, as described by the submission's author (n = 16); surveys conducted specifically for the submission (n=34); and new interviews of patients and family members on disease and drug experiences (n = 36). Half (forty-seven of ninety-three) of the patient input submissions included experiences of one or more patients who had received the drug under review. Secondary data included: published literature (n = 31); existing surveys (n = 27); past conversations with patients and family members (n = 36); experiences of patient group staff interacting with patients and family members (n = 19); and advice from clinical experts (n = 17). Many patient input submissions (sixty-eight out of ninety-three) reported multiple approaches to collect data. Use of two approaches was most common (thirty-seven out of ninety-three) with five or six approaches used in three of ninety-three submissions.

Despite resource and timing challenges, many patient groups gather primary data to share with CADTH and find individuals with experience of the drug under review.