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REFERENCES

  • 1
    Lee LM, Yessis J, Kost RG, Henderson DK. Managing clinical risk and measuring participants’ perceptions of the clinical research process. In: Ogibene FO, Gallin JI, eds. Principles and Practice of Clinical Research, 3rd Edition. Boston : Elsevier; 2011: in press.
  • 2
    Cohn E, Larson E. Improving participant comprehension in the informed consent process. J Nurs Scholarsh.2007; 39(3): 273280.
  • 3
    Flory J, Emanuel E. Interventions to improve research participants’ understanding in informed consent for research: a systematic review. JAMA. Oct 62004; 292(13): 15931601.
  • 4
    Knifed E, Lipsman N, Mason W, Bernstein M. Patients’ perception of the informed consent process for neurooncology clinical trials. Neuro Oncol.Jun2008; 10(3): 348354.
  • 5
    Reynolds WW, Nelson RM. Risk perception and decision processes underlying informed consent to research participation. Soc Sci Med.Nov2007; 65(10): 21052115.
  • 6
    Sugarman J, Paasche-Orlow M. Confirming comprehension of informed consent as a protection of human subjects. J Gen Intern Med.Aug2006; 21(8): 898899.
  • 7
    Hallowell N, Cooke S, Crawford G, Lucassen A, Parker M, Snowdon C. An investigation of patients’ motivations for their participation in genetics-related research. J Med Ethics.Jan2010; 36(1): 3745.
  • 8
    Mathur VA, Harada T, Lipke T, Chiao JY. Neural basis of extraordinary empathy and altruistic motivation. Neuroimage.Jul 152010; 51(4): 14681475.
  • 9
    McCann SK, Campbell MK, Entwistle VA. Reasons for participating in randomised controlled trials: conditional altruism and considerations for self. Trials.2010; 11: 31.
  • 10
    Stunkel L, Grady C. More than the money: a review of the literature examining healthy volunteer motivations. Contemp Clin Trials.May2011; 32(3): 342352.
  • 11
    Association for the Accreditation of Human Research Participation Programs. Accreditation Standards. http://www.aahrpp.org/www.aspx?PageID=318. Published 2011. Accessed May 25, 2011.
  • 12
    Cleary PD, Edgman-Levitan S. Health care quality. Incorporating consumer perspectives. JAMA.Nov 191997; 278(19): 16081612.
  • 13
    Cleary PD, Edgman-Levitan S, Roberts M, et al. Patients evaluate their hospital care: a national survey. Health Aff (Millwood). Winter1991; 10(4): 254267.
  • 14
    Edgman-Levitan S. Through the patient’s eyes. J Healthc Des.1997; 9: 2730.
  • 15
    Gerteis M, Edgman-Levitan S, Daley J, Delbanco T. Through the Patient’s Eyes. San Francisco , CA : Jossey-Bass; 1993; 15(3): 26.
  • 16
    Gerteis M, Edgman-Levitan S, Walker JD, Stoke DM, Cleary PD, Delbanco TL. What patients really want. Health Manage Q.1993; 15(3): 26.
  • 17
    Jenkinson C, Coulter A, Bruster S. The Picker Patient Experience Questionnaire: development and validation using data from in-patient surveys in five countries. Int J Qual Health Care.Oct2002; 14(5): 353358.
  • 18
    Centers for Medicare and Medicare Services. HCAHPS: Patients’ Perspectives of Care Survey. http://www.cms.gov/HospitalQualityInits/30_HospitalHCAHPS.asp. Published 2011. Accessed May 25 2011.
  • 19
    Joint Commission. Comprehensive accreditation manual for hospitals. In: Commission TJ, ed. Performance Improvement (PI). Oakbrook Terrace , IL : Joint Commission Resources; 2011:P1-5.
  • 20
    Durian D. Corpus-based text analysis from a qualitative prespective: a closer look at NVivo. Style. 2002; 36(4): 738742.
  • 21
    Rath A. NVivo 8. Lang Document Conser.2011; 5: 6065.
  • 22
    Walsh M. Teaching qualitative analysis using QSR NVivo. Qualitat Rep.2003; 8(2): 251256.
  • 23
    Gerring J.Case Study Research: Principles and Practice. New York , NY : Cambridge University Press; 2007: 9397.
  • 24
    Beecher HK. Ethics and clinical research. N Engl J Med.1966; 274: 13541360.
  • 25
    Emanuel E, Couch R, Arras J, Moreno J, Grady C. Part I: scandals and tragedies of research with human participants: Nuremberg, the Jewish Chronic Disease Hospital, Beecher, and Tuskegee. In: Emanuel E, Couch R, Arras J, Moreno J, Grady C., eds. Ethical and Regulatory Aspects of Clinical Research. Baltimore : Johns Hopkins University Press; 2003: 123.
  • 26
    Jones J. Bad Blood: The Tuskegee Syphillis Experiment. New York , NY : Free Press; 1993: 1302.
  • 27
    Morris N, Schneider M. Volunteer research subjects’ experience of participation in research on a novel diagnostic technology for breast cancer. Qual Health Res. 2010; 20(1): 8192.
  • 28
    Morris N, Balmer B. Volunteer human subjects’ understandings of their participation in a biomedical research experiment. Soc Sci Med. 2006; 62(4): 9981008.
  • 29
    Wootten AC, Abbott JM, Siddons HM, Rosenthal MA, Costello AJ. A qualitative assessment of the experience of participating in a cancer-related clinical trial. Support Care Cancer.2011; 19(1): 4955.
  • 30
    Cleary PD. The increasing importance of patient surveys. Qual Health Care. 1999; 8(4): 212.
  • 31
    Cleary PD, Edgman-Levitan S, Walker JD, Gerteis M, Delbanco TL. Using patient reports to improve medical care: a preliminary report from 10 hospitals. Qual Manag Health Care.1993; 2(1): 3138.
  • 32
    Isaac T, Zaslavsky AM, Cleary PD, Landon BE. The relationship between patients’ perception of care and measures of hospital quality and safety. Health Serv Res.2010; 45(4): 10241040.
  • 33
    Jha AK, Orav EJ, Zheng J, Epstein AM. Patients’ perception of hospital care in the United States. N Engl J Med.2008; 359(18): 19211931.
  • 34
    Laine C, Davidoff F, Lewis CE, et al. Important elements of outpatient care: a comparison of patients’ and physicians’ opinions. Ann Intern Med.1996; 125(8): 640645.
  • 35
    Lynn MR, McMillen BJ. Do nurses know what patients think is important in nursing care? J Nurs Care Qual.1999; 13(5): 6574.
  • 36
    Shannon SE, Mitchell PH, Cain KC. Patients, nurses, and physicians have differing views of quality of critical care. J Nurs Scholarsh.2002; 34(2): 173179.
  • 37
    Yamasue H, Abe O, Suga M, et al. Sex-linked neuroanatomical basis of human altruistic cooperativeness. Cereb Cortex.2008; 18(10): 23312340.
  • 38
    Moll J, Krueger F, Zahn R, Pardini M, de Oliveira-Souza R, Grafman J. Human fronto-mesolimbic networks guide decisions about charitable donation. Proc Natl Acad Sci U S A.2006; 103(42): 1562315628.
  • 39
    Appelbaum PS, Roth LH, Lidz C. The therapeutic misconception: informed consent in psychiatric research. Int J Law Psychiatry.1982; 5(3–4): 319329.
  • 40
    Henderson GE, Churchill LR, Davis AM, et al. Clinical trials and medical care: defining the therapeutic misconception. PLoS Med.2007; 4(11): e324.
  • 41
    Partridge AH, Winer EP. Sharing study results with trial participants: time for action. J Clin Oncol.2009; 27(6): 838839.