OBJECTIVES: Latin America (LATAM) has seen a transition to democracy, leading to experiments with participatory governance. Argentina, Brazil, and Colombia have implemented formal mechanisms to involve patients and citizens in Health Technology Assessment (HTA). This study aimed to explore this involvement.

METHODS: Interviews with different stakeholders from these countries and an online survey from 10 LATAM countries were conducted to identify and rank best practices, gaps, and recommendations.

RESULTS: In Argentina, the patient committee within CONETEC, featuring four patient representatives involved in the entire HTA process, was recognized as a best practice. Brazilian interviewees mentioned public consultations, patient testimonials, public hearings, and broadcasting meetings as best practices by CONITEC. Colombia's highlighted practice was the release of a handbook by the IETS that incorporated patient feedback. Gaps identified included a lack of patient knowledge, undervaluing of patient involvement, lack of transparency and information, unclear methodology, and ineffective communication. Recommendations to address these gaps include better representation and diversity of patients, continuous patient involvement, clear and transparent methods of participation, training, transparent expectations and roles, government support, sharing experiences, evaluation, and improved communication. The top 4 practices, ranked by the online survey, were: training, continuous patient involvement, participation guides, and patient participation in committees and meetings. However, respondents felt that patients and patient groups were unprepared and had little impact on health decision-making. The most pressing gap was the undervaluing of patient involvement by HTA institutions, followed by lack of patient knowledge, transparency and information, and unclear methodology. The top recommendations to address these gaps were clear participation methods, patient involvement throughout the process, better government support and dialogue, and user-friendly guides for participation.

CONCLUSIONS: Patient participation is crucial in healthcare, and efforts should be made to involve patients and bridge the identified gaps. Implementing the identified recommendations can lead to a genuine patient-centered healthcare system.