Are We Making a Difference? A Qualitative Study of Patient Engagement at the pan-Canadian Oncology Drug Review: Perspectives of Patient Groups

Despite wide support for patient involvement in health technology assessments (HTA), determining meaningful engagement is complex. This article explores experiences and perceptions among patient groups participating in the Canadian Agency for Drugs and Technologies in Health (CADTH)’s pan-Canadian Oncology Drug Review (pCODR) process. We created a qualitative interview study comprising 22 semi-structured telephone interviews with individuals representing 21 different patient groups registered with the pCODR process. The analysis used a qualitative descriptive approach employing techniques from grounded theory. Patient groups view the ability to make submissions to the pCODR process as a meaningful activity closely aligned with organizational priorities. Concurrently, they face substantial resource challenges to prepare submissions, including high opportunity costs and difficulty accessing needed literature and finding relevant patients. Although patient groups felt that CADTH is committed to transparency, they expressed considerable uncertainty around the direct impact of their submissions and desired additional avenues for engagement. This study suggests a strong commitment by patient groups to participate in the pCODR process despite uncertainty about how their submissions are used to inform HTA recommendations. Identifying opportunities to provide both financial and nonfinancial resources to patient groups is crucial to encouraging and supporting their meaningful participation in HTA processes. •Although there is widespread support for patient engagement in health technology assessments (HTA), there is limited evidence about why and how patient input is important and a limited understanding of the experiences and perspectives of participating patient groups.•Our study identifies a deep commitment from patient groups to participate in the pan-Canadian Oncology Drug Review (pCODR) process. They especially value the opportunity to provide information not available in trials, such as patient/caregiver priorities, but their participation is limited by substantial challenges including significant opportunity costs (eg, displacing patient support activities), difficulty accessing literature, or trouble finding relevant patients. Patient groups are uncertain regarding the impact of their submissions and expressed a desire for additional avenues of engagement.•Our work makes a substantial contribution to the literature by providing detailed, specific examples of