Abstract

The term “Health Technology Assessment” (HTA) designates the systematic evaluation of therapies (drugs and non-drug interventions) and technologies for cost effectiveness, clinical effectiveness and safety to form the basis for evidence-based priority setting and policy decisions (reimbursement and coverage decisions). Usually, therapeutic or diagnostic interventions are subject to the assessment, but also complex programs (e.g. prophylactic screening programs) may be investigated. The involvement of patient organisations in Health Technology Assessments improves outcomes and offers additional insights. It guarantees that the perspective of the most important group – the patients as consumers – is adequately addressed.

A patient organisation may be involved in various ways in Health Technology Assessments: Patient organisations can identify gaps in healthcare coverage and initiate the generation of a respective Health Technology Assessment; they can provide additional registry data, complementing study data from randomised controlled trials for the Health Technology Assessment. The provision of information on patient-relevant outcomes and other patient-relevant aspects (e.g. mode of administration) is crucial to assess the benefit for patients of the therapy (or technology/program) under evaluation. Moreover, patient organisations may also be involved in the evaluation of the assessment report and in the execution of the results.

Generation of an HTA can be a time-consuming process and a very demanding one for patient organisations and the involved volunteers. Staff members of the patient organisation can be involved directly in the various tasks, or indirectly, supporting voluntary patients. If voluntary patients attend panel groups, most of them will need intensive support by their respective patient organisation depending on the complexity of the respective topic. Finding qualified volunteers, willing to spend a substantial amount of their time and able to travel frequently, is another obstacle to overcome.

This presentation provides some examples of the involvement in Health Technology Assessments of the German Rheumatism League, Germany’s largest patient organisation with about 3 00 000 members, and the essential prerequisites for the participation of patient organisations in that process.