Consultation and Input

As work on the pan-Canadian Drug Funding Sustainability Initiative got underway in 2016 and early 2017, CAPCA and its partners engaged with key stakeholders – patient groups, pharmaceutical industry and clinicians – to share information and seek input.

Early in 2017, webinars were held for patient advocacy groups, the pharmaceutical industry, and clinicians. An estimated 250 people participated in the webinars, which can be viewed here:

The webinars were followed by in-person roundtables for patient groups and the pharmaceutical industry in February (Vancouver) and March (Toronto), and for clinicians in April (Toronto) and June (Calgary). Additionally, two patient-group events in were held in April (Ottawa). Roundtables ranged from 20 to 50 attendees.

Feedback was also gathered through an online survey and via email to ensure input from people unable to attend the webinar or roundtable session. All feedback was consolidated and summarized, and considered by CAPCA to inform the drug funding sustainability work.  The summary was shared with participants. It is available here.

In response to stakeholder input about the need for greater transparency with regards to CDIAC and the need for a patient and public representative at the CDIAC table, detailed information was added to the CAPCA website about CDIAC membership and process, and a patient and public representative joined the CDIAC. A family representative was also identified. Work continues in the area of real world evidence, which confirms if what is seen in clinical trials is what will be the case when the drug is launched and made available to a larger population.

To identify potential patient and family representatives to bring a critical perspective to CDIAC discussions, CAPCA worked through existing processes with provincial patient and family advisory council (PFAC) staff leads. A public representative was identified through support from Asking Canadians – the group that identified participants for CPAC’s deliberative public engagement program. A number of potential candidates were identified and interviewed, then selected by the CAPCA Board of Directors, which represents a senior staff person from every provincial cancer program.