Since 2019, Canada’s Drug and Health Technology Agency (CADTH) has worked directly with patients through its Patient and Community Advisory Committee (PCAC). In Brazil, Conitec has worked directly with patients since 2021 through testimonials in its committee meetings for all assessed technologies. In this study we explored patients’ perspectives about their participation in these processes.

Two patients directly involved with both CADTH and Conitec were invited to share their perspectives about the strengths and weaknesses of the patient engagement processes.

For CADTH, the strengths were as follows: PCAC focuses on the whole organization, including the patient engagement strategy and strategic plan, and is on the same level as other professional committees; PCAC members are compensated; the ‘Learning Sessions’ show CADTH staff the ramifications of their work in people’s lives; and there is increased patient engagement on other committees throughout CADTH. The weaknesses identified with the CADTH process were that PCAC is an advisory body with no decision-making authority and that the diversity of people on the PCAC could be increased. In addition, while CADTH informs and consults patients, the PCAC is not involved in individual HTAs.

The strengths of Conitec’s process were that the volunteer is selected by patients; there are opportunities to consolidate direct patient involvement and promote it in other instances; and the technical support is excellent. On the downside, there was a lack of information about this opportunity; the testimonials last only ten minutes and patients are frequently not questioned; only one patient can participate; there is a lack of transparency about testimonial analysis and its role; and being the only representative during a discussion that culminates in a decision can cause anxiety about performance.

Patients felt heard in the engagement processes and stated that the PCAC embeds patient perspectives throughout CADTH, not just in particular HTAs. One patient felt that her participation was essential for the committees to understand patients’ lived experiences.