
Contents
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2 Illness narratives in practice: Which questions do we have to face when collecting and using them?
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3 The researchers’ role in re-constructing patient narratives to present them as patient experiences
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21 Understanding and using health experiences to improve healthcare—examples from the United Kingdom
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Introduction Introduction
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The media as a prism for public narratives The media as a prism for public narratives
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The changing technological and normative foundations for newborn screening The changing technological and normative foundations for newborn screening
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Changing technology at the turn of the century Changing technology at the turn of the century
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Evolving ethical norms Evolving ethical norms
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Newborn screening in the United States: crafting a public narrative Newborn screening in the United States: crafting a public narrative
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Research methods Research methods
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Media analysis Media analysis
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Newborn screening programme director interviews Newborn screening programme director interviews
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Findings Findings
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Views from the field: NBS programme interviews Views from the field: NBS programme interviews
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Sources of information and coverage differences: media analysis Sources of information and coverage differences: media analysis
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Advocacy differences reflected in media across countries Advocacy differences reflected in media across countries
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Cross-national differences in media content Cross-national differences in media content
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Differences in coverage within the United States Differences in coverage within the United States
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Does media content shape NBS policy-making? Does media content shape NBS policy-making?
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When public and private narratives diverge: lessons and implications When public and private narratives diverge: lessons and implications
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References References
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23 When public and private narratives diverge: Media, policy advocacy, and the paradoxes of newborn screening policy
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Published:October 2018
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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.
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