PNS60 Patient Representation in Health Policy Decisions - Learnings from an Ispor Hungary Chapter Project

Abstract

Consistent inclusion of the patient perspective in health policy decisions is yet to become a reality in Hungary. We aimed to evaluate core issues and main expectations of stakeholders to establish actionable solutions. Since 2018, the ISPOR Hungary Chapter had multiple group discussions with national patient organisation leaders to map potential areas for collaboration. During these meetings, strengthening the relationship between patient representatives and decision makers was set as a priority for the joint effort. A two-step approach was adapted: 1) In May 2019 a training session was organised for patient representatives (n=34), where experts from governmental agencies explained the local reimbursement process, and international examples of patient engagement were showcased. 2) In December 2019 a multi-stakeholder conference (n=115) was organised on patient involvement in health policy decisions with an on-site survey. According to survey respondents the most important expectations from patient representatives when involved in health policy decisions are (1) representing common goals of the patient community instead of individual ones, (2) well-preparedness, and (3) collecting information directly from the patient community and providing feedback to them. On the other hand, the most important expectations of patients from public policy-makers are (1) an assigned contact point within the governmental body for patient engagement (with devoted time and capacities) (2) using lay language (3) support in understanding the decision context and benefits of new health technologies. As a conclusion, participants agreed that an optimal short-term solution for including the patient perspective in reimbursement decisions would be to involve disease-specific patient representation to every Health Technology Assessment Committee meeting, or having a separate consultation with patients and channelling its conclusions to the Committee meeting. If key obstacles of patient representation are identified and addressed by targeted solutions, proper and systematic patient representation can be facilitated in health policy decisions.