Demanding Dynamics - Demand articulation of intermediary organisations in emerging pharmaceutical innovations

Abstract

User involvement in emerging technological fields is carried by so-called demand articulation processes. These demand articulation processes are interactive learning processes in which stakeholders try to address what they perceive as important characteristics of, and to unravel preferences for an emerging innovation. The focus lies on intermediary user organisations, i.e. organised stakeholders that facilitate interactions between users and one or more other actors. In the thesis the following research question is answered: How to understand the demand articulation processes of intermediary user organisations in the context of emerging pharmaceutical technologies? Demand articulation processes are studied in the context of three intermediary user organisations using the ‘event history analysis’. The three Dutch organisations, which are dealing with emerging pharmaceutical innovations are: the Steering committee on orphan drugs, the Breast cancer association, and the Neuromuscular disease association. For the three studied intermediary user organisations it is found that demand articulation processes inside intermediaries can be regarded as an interconnected ensemble of first-order and second-order learning loops. Differences in characterisation of these loops related to distinct contexts and organisations lead to the identification of several specific demand articulation mechanisms, such as ‘management of expectations’, ‘network building’ and ‘active case building’. The intermediary user organisations apply different kinds of interface strategies towards the actors they represent and other relevant parties. The represented actors, subdivided in the ‘silent majority’ and the ‘patient champions’ merit from the representation of them without interaction to quick, passionate calls for action (‘sudden anxiety’) and strategies focusing on longer-term commitment. Concerning interactions with other relevant parties, interface strategies range from asked advocacy in the form of consultative presentation to unasked advocacy, and from forceful to tentative strategies. These strategies were most of the time not the result of ad hoc actions but had a proactive and long-term focus. The analysis showed that intermediaries tried to shape emerging technologies in such a way that the resulting innovations meet the needs and wishes of the users they represent. The identified demand articulation mechanisms and interface strategies illustrate the way in which they attempt to achieve this. Moreover, these organisations are faced with three dilemmas: 1) Positioning: the confrontation of intermediary’s self-position and the position other actors assign to them reveals possible problems with the neutrality of intermediaries. 2) Representation: for intermediaries it is essential to speak on behalf of their members and picture their demands in a representative way. In this way it can enhance the democratic value of the organisations’ decision-making and input in debates. 3) The need to be proactive: in this way, intermediaries can better anticipate the course of the debate. Moreover, by creating a vision of future technologies in an early phase empowers the intermediary. These three dilemmas show that intermediary user organisations play a precarious role in demand articulation in the context of emerging technologies. However, if these dilemmas can be overcome, these organisations could and will play a central and crucial role in (democratically) governing future oriented technology analysis