The dark side of hope and trust: Constructed expectations and the value-for-money regulation of new medicines

Abstract

New medicines represent exciting possibilities to individual patients for improved futures through reduced morbidity, as well as the potential for disappointment where promised outcomes are not forthcoming. For healthcare systems these technologies can enable enhanced effectiveness as well as spiralling costs, depending on value-for-money offered. Amidst uncertainty over efficacy and pricing, institutions such as the National Institute for Health and Clinical Excellence have been set up to regulate the cost-effectiveness of new products. The increased transparency of this new regulation, combined with inescapable uncertainties, leads to the heightened politicisation of decision-making and an insidious subjectivity beneath a veneer of rational-bureaucracy. This paper develops a theoretical framework for understanding the influence of hope within such contexts. Conceptualised here as ideological, affective and prone to lapsing into trust, hope is considered to shape the lifeworld-background of regulatory decisions and mask uncertainty around effectiveness. These processes challenge regulator legitimacy and effectiveness within polycentric regimes, through the distortion of communication and the manipulation of blame.

Keywords:

• hope
• NICE
• pharmaceuticals
• regulation
• sociology
• uncertainty