What does meaningful look like? A qualitative study of patient engagement at the Pan-Canadian Oncology Drug Review: perspectives of reviewers and payers

Abstract

Objectives While there is wide support for patient engagement in health technology assessment, determining what constitutes meaningful (as opposed to tokenistic) engagement is complex. This paper explores reviewer and payer perceptions of what constitutes meaningful patient engagement in the Pan-Canadian Oncology Drug Review process. Methods Qualitative interview study comprising 24 semi-structured telephone interviews. A qualitative descriptive approach, employing the technique of constant comparison, was used to produce a thematic analysis. Results Submissions from patient advocacy groups were seen as meaningful when they provided information unavailable from other sources. This included information not collected in clinical trials, information relevant to clinical trade-offs and information about aspects of lived experience such as geographic differences and patient and carer priorities. In contrast, patient submissions that relied on emotional appeals or lacked transparency about their own methods were seen as detracting from the meaningfulness of patient engagement by conflating health technology assessment with other functions of patient advocacy groups such as fundraising or public awareness campaigns, and by failing to provide credible information relevant to deliberations. Conclusions This study suggests that misalignment of stakeholder expectations remains an issue even for a well-regarded health technology assessment process that has promoted patient engagement since its inception. Support for the technical capacity of patient groups to participate in health technology assessment is necessary but not sufficient to address this issue fully. There is a fundamental tension between the evidence-based nature of health technology assessment and the experientially oriented culture of patient advocacy. Divergent notions of what constitutes evidence and how it should be used must also be addressed.

Co‐construction of health technology assessment recommendations with patients: An example with cardiac defibrillator replacement

“…The Canadian Agency for Drugs and Technologies in Health (CADTH) also involves patients, on working groups and committees at several levels, in the assessment process for medications and medical devices, through the use of questionnaires . For example, the Pan‐Canadian Oncology Drug Review, an evidence‐based cancer medication assessment that is part of the programmes and services led by CADTH, offers patients the chance to share their experience as participants in clinical trials and to describe needs unmet by current therapies…”

Development of a decisional flowchart for meaningful patient involvement in Health Technology Assessment

“…If no relevant patient perspective literature is available to meet the objectives pursued, primary studies are needed. These primary studies could provide information “unavailable from other sources,” which a previous evaluation of PI in HTA identified as one of the most relevant aspects of meaningful participation (22). Furthermore, these primary studies can collect specific and contextual contributions from broader groups, including populations that are not usually involved in advisory panels, such as people at risk of exclusion (23).…”

Stories of Patient Involvement Impact in Health Technology Assessments: A Discussion Paper

“…At CADTH, a recent independent evaluation of patient involvement in medicine HTAs, specifically the Pan-Canadian Oncology Drug Review, included interviewing expert committee members, agency staff and patient groups to explore different expectations for patient involvement and if these have been met (25). It also measured impact against set goals defined by the participants, rather than external criteria, to explore variable achievement of democratic and scientific goals.…”