When public and private narratives diverge

Abstract

Individuals experience illness and healthcare in diverse ways. Advocates striving to create system change, however, typically simplify representations of patient experience. These ‘crafted’ public narratives better accord with journalists’ ideals of compelling, coherent, attention-grabbing stories. But condensing diverse experiences into univocal narratives has costs: some patients’ voices are silenced, and vital ethical issues are overlooked. This chapter uses a case study of advocacy around newborn screening (NBS) to explore the origins and implications of crafted public narratives. It traces the emergence of a single ‘urgency narrative’ used by advocates to promote expanded screening and compares its impact on media coverage and policy-making across the United States and among five English-speaking nations. It shows that crafted narratives are most influential in countries where NBS policies are set subnationally, since geographic variation both fosters advocates’ search for compelling narratives and makes those narratives more evocative, enhancing their impact on policy-making.