Patients as Policy Actors offers groundbreaking accounts of one of the health field's most important developments of the last fifty years--the rise of more consciously patient-centered care and policymaking. The authors in this volume illustrate, from multiple disciplinary perspectives, the unexpected ways that patients can matter as both agents and objects of health care policy yet nonetheless too often remain silent, silenced, misrepresented, or ignored. The volume concludes with a unique epilogue outlining principles for more effectively integrating patient perspectives into a pluralistic conception of policy-making. With the recent enactment of the Patient Protection and Affordable Care Act, patients' and consumers' roles in American health care require more than ever the careful analysis and attention exemplified by this innovative volume.

Within forty-eight hours after birth, the heel of every baby in the United States has been pricked and the blood sent for compulsory screening to detect or rule out a large number of disorders. Newborn screening is expanding rapidly, fueled by the prospect of saving lives. Yet many lives are also changed by it in ways not yet recognized. Testing Baby is the first book to draw on parents’ experiences with newborn screening in order to examine its far-reaching sociological consequences. Rachel Grob’s cautionary tale also explores the powerful ways that parents’ narratives have shaped this emotionally charged policy arena. Newborn screening occurs almost always without parents’ consent and often without their knowledge or understanding, yet it has the power to alter such things as family dynamics at the household level, the context of parenting, the way we manage disease identity, and how parents’ interests are understood and solicited in policy debates.

Within forty-eight hours after birth, the heel of every baby in the United States has been pricked and the blood sent for compulsory screening to detect or rule out a large number of disorders. Newborn screening is expanding rapidly, fueled by the prospect of saving lives. Yet many lives are also changed by it in ways not yet recognized. Testing Baby is the first book to draw on parents' experiences with newborn screening in order to examine its far-reaching sociological consequences. Rachel Grob's cautionary tale also explores the powerful ways that parents' narratives have shaped this emotionally charged policy arena. Newborn screening occurs almost always without parents' consent and often without their knowledge or understanding, yet it has the power to alter such things as family dynamics at the household level, the context of parenting, the way we manage disease identity, and how parents' interests are understood and solicited in policy debates.

Patients as Policy Actors offers groundbreaking accounts of one of the health field's most important developments of the last fifty years--the rise of more consciously patient-centred care and policymaking. The authors in this volume illustrate, from multiple disciplinary perspectives, the unexpected ways that patients can matter as both agents and objects of health care policy yet nonetheless too often remain silent, silenced, misrepresented, or ignored. The volume concludes with a unique epilogue outlining principles for more effectively integrating patient perspectives into a pluralistic conception of policy-making. With the recent enactment of the Patient Protection and Affordable Care Act, patients' and consumers' roles in American health care require more than ever the careful analysis and attention exemplified by this innovative volume.