Giving patients a voice in Health Technology Assessment decision-making in Greece: a patient advocacy group consensus analysis

Abstract

Abstract Objective This analysis aimed to assess patient advocacy groups’ (PAGs) perspectives on patients’ and PAGs’ potential role in Health Technology Assessment (HTA) decision-making in Greece. Methods In total, 22 representatives of PAGs participated in a consensus panel meeting. Participants’ views were elicited via a consensus panel meeting, through a televoting procedure, based on a structured questionnaire with close-ended questions. Voting was anonymous, to avoid the influence of the dominant personality. After voting, the results were presented to the participants and televoting was repeated to achieve consensus. Key findings The majority of participants (94.8%) believe that valid information on the developments regarding HTA in Greece is not conveyed to them by the official national regulatory sources. Key sources of valid information on developments regarding HTA were: conferences (95.2%), international PAGs (85.7%) and HTA experts/scientists (76.2%). About 76.2% of participants evaluated PAGs’ competence to participate in policy-making concerning HTA scheme formation as moderate or higher. Regarding patients’ effective participation in HTA decision-making, greater importance (points 4 and 5 on a 5-point scale) was given to their education on treatment effects in terms of quality of life (100.0%), basic principles of health economics and pharmaceutical policy (95.5%) and ethical aspects of HTA (95.0%). About 55.0% strongly agree that patients should formally express their opinion on HTA issues, while 72.7% believe that patients’ opinions on HTA issues should be expressed through participation in the process and right to vote. Conclusions The participation of patients in HTA decision-making is an issue not only of justice but also of essence. For a productive participation, PAGs training is essential.