LEADER 03673nam 2200601Ia 450 001 9910457205003321 005 20200520144314.0 010 $a1-283-86436-3 010 $a0-8135-5085-8 035 $a(CKB)2550000000084254 035 $a(EBL)858954 035 $a(OCoLC)775872927 035 $a(SSID)ssj0000606584 035 $a(PQKBManifestationID)11400081 035 $a(PQKBTitleCode)TC0000606584 035 $a(PQKBWorkID)10582897 035 $a(PQKB)11070973 035 $a(MiAaPQ)EBC858954 035 $a(MdBmJHUP)muse16165 035 $a(Au-PeEL)EBL858954 035 $a(CaPaEBR)ebr10533626 035 $a(CaONFJC)MIL417686 035 $a(EXLCZ)992550000000084254 100 $a20100930d2011 ub 0 101 0 $aeng 135 $aurcn||||||||| 181 $ctxt 182 $cc 183 $acr 200 00$aPatients as policy actors$b[electronic resource] /$fedited by Beatrix Hoffman ... [et al.] 210 $aNew Brunswick, NJ $cRutgers University Press$dc2011 215 $a1 online resource (319 p.) 225 1 $aCritical issues in health and medicine 300 $aDescription based upon print version of record. 311 $a0-8135-5050-5 320 $aIncludes bibliographical references and index. 327 $aIntroduction : patients as policy actors / Nancy Tomes and Beatrix Hoffman -- Solitary advocates : the severely brain injured and their surrogates / Joseph Fins and Jennifer Hersh -- Physician-patient communication in the care of vulnerable populations : the patient's voice in interpersonal policy / M. Robin DiMatteo ... [et al.] -- Is it time to push yet? The challenges to advocacy in American childbirth / Elizabeth Mitchell Armstrong and Eugene DeClercq -- A pound of flesh : patient legal action for human research protections in the biotech age / Lori Andrews and Julie Burger -- From outsiders to insiders : the consumer/survivor movement and -- Its impact on American mental health policy / Nancy Tomes -- "Don't scream alone" : the health care activism of poor Americans in the 1970's / Beatrix Hoffman -- The canary in Gemeinschaft : using the public voice of patients to enhance health system performance / Mark Schlesinger -- Patient appeals as policy disputes : individual and collective action in managed care / Marc Rodwin -- The power of us : a new approach to advocacy for rare cancers / Amy Dockser Marcus -- Patients and the rise of the nurse practitioner profession / Julie Fairman -- A house on fire : newborn screening, parents' advocacy, and the discourse of urgency / Rachel Grob -- Measuring success : scientific, institutional, and cultural effects of patient advocacy / Steven Epstein. 330 $aPatients as Policy Actors offers groundbreaking accounts of one of the health field's most important developments of the last fifty years--the rise of more consciously patient-centered care and policymaking. The authors in this volume illustrate, from multiple disciplinary perspectives, the unexpected ways that patients can matter as both agents and objects of health care policy yet nonetheless too often remain silent, silenced, misrepresented, or ignored. 410 0$aCritical issues in health and medicine. 606 $aPatient advocacy$zUnited States 606 $aMedical policy$zUnited States 608 $aElectronic books. 615 0$aPatient advocacy 615 0$aMedical policy 676 $a362.1068 701 $aHoffman$b Beatrix Rebecca$0943404 801 0$bMiAaPQ 801 1$bMiAaPQ 801 2$bMiAaPQ 906 $aBOOK 912 $a9910457205003321 996 $aPatients as policy actors$92129241 997 $aUNINA