OBJECTIVES: Patient engagement with HTA bodies remains of interest to many patients, despite strides and greater inclusion. Engagement with regulatory agencies can provide a benchmark for comparison.

METHODS: Here, we use agency documents on patient engagement to assess their approach to patient engagement, seeking to better understand how they present the process for interested patients. As we use text analysis, we identified 10 organizations that had published descriptions of their patient engagement approach in English. We included four public HTA agencies, two private HTA agencies, two regulatory bodies, and two patient-focused organizations.

RESULTS: Individual patients were found to be mainly involved with providing their disease experience during a relatively early information-gathering stage. Both "patient representative" and "patient expert" are used to describe patients who engage with direct contact (e.g., meetings or by joining a group); however, patient representative still appears to be more commonly discussed, 76 versus 2 mentions, respectively. Surveys, interviews, and focus groups are among the most mentioned means of engagement with HTA bodies for collecting patient evidence, 293, 169, and 65 mentions, respectively. HTAs are interested in cost but seek more information on disease and treatment experience from patients. Quality of life, disease burden, and social life were less often mentioned explicitly, outside the expressed interest in the disease per se.

CONCLUSIONS: While patient engagement appears to have increased, particularly in broad information gathering, and the use of patient experts appear to have developed to help fill a niche, there is ongoing interest in discussing how effective current efforts have been in reflecting the patient voice. The science of developing patient evidence that reflects the interests of the patients continues to evolve and how it affects improved patient engagement frameworks in HTA remain areas for further research.