Reflections on Terms, Goals and Organisation

Abstract

In this chapter, we address three challenges relating to patient involvement in HTA. Firstly, we reflect on some of the terms often used by HTA researchers, patient organisations and HTA bodies to describe the patients who participate in HTAs including terms such as ‘patient’, ‘patient advocate’, ‘patient representative’, ‘patient partner’ and ‘consumer’. This challenge has previously been described in relation to healthcare in general. Dent and Pahor write: ‘The whole arena of patient involvement within healthcare is riven with problems of meaning, definition and purpose’ (Dent and Pahor 2015). In addition, they argue that the topic is further complicated when one attempts to compare practices across countries (Dent and Pahor 2015). Secondly, we discuss how the choice of term and hence the choice of participants may influence the realisation of goals with patient involvement in HTA. We argue that a challenge lies in confusion about the goals for implementing patient involvement in HTA, particularly when these goals compete with a variety of other goals such as cost containment or decision-making based on strictly defined clinical effectiveness. Thirdly, we address the challenge relating to leadership and organisational change, because some of the goals for patient involvement in HTA will require new ways of organizing and leading HTAs. We briefly introduce three models for organising patient involvement in HTA. The aim of the chapter is to contribute to the current debate on the use of terms to describe patient involvement and the nature of the associated goals and organisation supporting this involvement.