SP0128 THE VARIOUS ROLES OF PATIENT PARTICIPATION IN HTA BY THE EXAMPLE OF IQWIG

Abstract

Background: The involvement of affected persons in preparing systematic reviews and HTA represents an established international standard of benefit assessment. The Institute of Quality and Efficiency in Health Care (IQWiG) is a professionally independent scientific Institute founded within the framework of the German Health Care Reform of 2004 as an establishment of the Foundation for Quality and Efficiency in Health Care. IQWiG provides benefit assessments addressing issues concerning the statutory health insurance services. Its responsibilities include among others the preparation of scientific reports, expert opinions and comments on quality and efficiency issues taking age, gender, and personal circumstances into account. Objectives: The goal of this presentation is to provide an overview on different paths of involvement of patients and affected persons at IQWiG. Methods: IQWiG”s legal basis and responsibilities are anchored in the Social Code Book Fifth Book – Statutory Health Insurance (SGB V) and have been adapted and extended several times in the course of further health care reforms. The Institute”s work is commissioned by the Federal Joint Committee or by the Federal Ministry of Health. The information for this presentation stems from IQWiG”s General Methods (currently in version 5.0), a publicly available paper provided on the Institute”s website, which explains the groundwork for its assessments. Results: The involvement of affected persons at IQWiG primarily takes place during the initial work on a report within the framework of patient-relevant outcomes and relevant subgroups. Moreover, involvement can also include partaking in hearings. Affected persons include in particular patients (represented by parents or relatives, when appropriate) as well as potential participants in prevention measures. Affected persons are found via the patient representation of the Federal Joint Committee, as well as national or local self-help organizations or groups, hospitals or medical practices, external experts or other routes. The involvement can consist of a personal consultation or providing information in writing (through questionnaires or reports on personal experience), in both cases with documenting potential conflicts of interest. Conclusion: As representatives of patients or self-help groups are sometimes not patients themselves and cannot directly account for symptoms or their impact on the quality of life, focus is placed on involving persons directly affected. Different assessments require distinct types of involvement depending on the available time and the confidentiality of the topic. Disclosure of Interests: None declared