Lead Investigator(s): Kelvin Chan
Lead Institution: Sunnybrook Research Institute
Co-Investigators: Alexandra Chambers, Helen Mai, Linda Rozmovits
ARCC Program Area(s): Health Technology Assessment
Funding Term: 2017-2018
Patient input into drug funding reviews by Health Technology Assessment (HTA) agencies is essential to ensuring that patient perspectives inform decision-making about drug reimbursement in publicly funded health-care systems. Our study explored the experiences of patient groups (PGs) participating in CADTH’s pan-Canadian Oncology Drug Review (CADTH-pCODR) process with a view to articulating the strengths and opportunities for improving patient engagement at CADTH-pCODR.
Participating in the pCODR process was a high priority for PGs because it was an opportunity to convey patient perspectives to decision-makers. Many indicated that they would do whatever was necessary to make a submission despite their often limited resources and the substantial opportunity costs involved. There was considerable variation in terms of PG capacity, level of familiarity with HTA, and access to key resources such as the peer-reviewed literature. Despite the high level of commitment to participating in the pCODR process, PGs did not feel that their submissions were especially influential. Many wished for greater understanding of how pCODR’s Expert Review Committee (pERC) deliberations integrated evidence from the patient submission. There was wide agreement that allowing PGs to present their own submissions to pERC would facilitate interpretation of patient values by pERC and allow individuals with expertise to convey more accurate accounts of patient experience.
Participants all felt that soliciting and sharing patient experience was meaningful activity closely aligned with their organizational priorities. However, this did not mean that they felt their submissions were especially influential. There is considerable variability amongst PGs in terms of their capacity and access to key resources. Opportunities for improvement of the current process include capacity building initiatives, facilitation of access to key resources where possible, and consideration of PGs’ request for the opportunity to directly convey patient perspectives to pERC.