The use of personal health information outside the circle of care: consent preferences of patients from an academic health care institution

[1]  R. Jagsi,et al.  Effect of Public Deliberation on Patient Attitudes Regarding Consent and Data Use in a Learning Health Care System for Oncology. , 2019, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[2]  L. Ohno-Machado,et al.  Patient Perspectives About Decisions to Share Medical Data and Biospecimens for Research , 2019, JAMA network open.

[3]  Eric Racine,et al.  Healthcare uses of artificial intelligence: Challenges and opportunities for growth , 2019, Healthcare management forum.

[4]  J. Pawlikowski,et al.  Public Attitudes toward Biobanking of Human Biological Material for Research Purposes: A Literature Review , 2019, International journal of environmental research and public health.

[5]  C. Gedye,et al.  Patients’ experiences and preferences for opt‐in models and health professional involvement in biobanking consent: A cross‐sectional survey of Australian cancer outpatients , 2019, Asia-Pacific journal of clinical oncology.

[6]  A. B. Hssane,et al.  Big healthcare data: preserving security and privacy , 2018, Journal of Big Data.

[7]  Jonathan R. Clark,et al.  "As Long as You Ask": A Qualitative Study of Biobanking Consent-Oncology Patients' and Health Care Professionals' Attitudes, Motivations, and Experiences-the B-PPAE Study. , 2018, The oncologist.

[8]  Nabile M. Safdar,et al.  Protecting Your Patients' Interests in the Era of Big Data, Artificial Intelligence, and Predictive Analytics. , 2018, Journal of the American College of Radiology : JACR.

[9]  Timothy Caulfield,et al.  Genes, cells, and biobanks: Yes, there’s still a consent problem , 2017, PLoS biology.

[10]  R. Jagsi,et al.  Perspectives of Patients With Cancer on the Ethics of Rapid-Learning Health Systems. , 2017, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[11]  R. Jagsi,et al.  Patient Perspectives on the Ethical Implementation of a Rapid Learning System for Oncology Care. , 2017, Journal of oncology practice.

[12]  Henry T. Greely,et al.  Clinical genomics, big data, and electronic medical records: reconciling patient rights with research when privacy and science collide , 2017, Journal of law and the biosciences.

[13]  D. Muruve,et al.  A survey of patient perspectives on the research use of health information and biospecimens , 2016, BMC medical ethics.

[14]  Neil Robinson,et al.  Public preferences for electronic health data storage, access, and sharing — evidence from a pan-European survey , 2016, J. Am. Medical Informatics Assoc..

[15]  Melissa L McPheeters,et al.  A systematic literature review of individuals' perspectives on broad consent and data sharing in the United States , 2015, Genetics in Medicine.

[16]  Y. Joly,et al.  Fair Shares and Sharing Fairly: A Survey of Public Views on Open Science, Informed Consent and Participatory Research in Biobanking , 2015, PloS one.

[17]  Lucila Ohno-Machado,et al.  Comparison of consumers' views on electronic data sharing for healthcare and research , 2015, J. Am. Medical Informatics Assoc..

[18]  Steven Joffe,et al.  Attitudes Toward Risk and Informed Consent for Research on Medical Practices , 2015, Annals of Internal Medicine.

[19]  Lucila Ohno-Machado,et al.  Sharing My Health Data: A Survey of Data Sharing Preferences of Healthy Individuals , 2014, AMIA.

[20]  Nathan T. Carter,et al.  Declines in Trust in Others and Confidence in Institutions Among American Adults and Late Adolescents, 1972–2012 , 2014, Psychological science.

[21]  Michael Morrison,et al.  Dynamic consent: a patient interface for twenty-first century research networks , 2014, European Journal of Human Genetics.

[22]  John P A Ioannidis,et al.  Informed Consent, Big Data, and the Oxymoron of Research That Is Not Research , 2013, The American journal of bioethics : AJOB.

[23]  M. Minden,et al.  Cancer patient perceptions on the ethical and legal issues related to biobanking , 2013, BMC Medical Genomics.

[24]  T. Caulfield,et al.  Biobanking, consent, and control: a survey of Albertans on key research ethics issues. , 2012, Biopreservation and biobanking.

[25]  M. Bamshad,et al.  Genomics really gets personal: How exome and whole genome sequencing challenge the ethical framework of human genetics research , 2011, American journal of medical genetics. Part A.

[26]  Jeffrey C Murray,et al.  Active choice but not too active: Public perspectives on biobank consent models , 2011, Genetics in Medicine.

[27]  H. Greely.  To the Barricades! , 2010, The American journal of bioethics : AJOB.

[28]  Lehana Thabane,et al.  Alternatives to project-specific consent for access to personal information for health research: Insights from a public dialogue , 2008, BMC medical ethics.

[29]  Karim Keshavjee,et al.  Patients' consent preferences regarding the use of their health information for research purposes: a qualitative study , 2004, Journal of health services research & policy.

[30]  Karim Keshavjee,et al.  Patients' consent preferences for research uses of information in electronic medical records: interview and survey data , 2003, BMJ : British Medical Journal.

[31]  Robert V. Robinson,et al.  Is Trust in Others Declining in America? An Age–Period–Cohort Analysis , 2001 .

[32]  C. Gedye,et al.  Enlisting the willing: A study of healthcare professional-initiated and opt-in biobanking consent reveals improvement opportunities throughout the registration process. , 2018, European journal of cancer.

[33]  Kelly Caine,et al.  Patients want granular privacy control over health information in electronic medical records , 2013, J. Am. Medical Informatics Assoc..

[34]  Rodney A Hayward,et al.  Patients, privacy and trust: patients' willingness to allow researchers to access their medical records. , 2007, Social science & medicine.

[35]  Hilde van der Togt,et al.  Publisher's Note , 2003, J. Netw. Comput. Appl..

[36]  D. Coomber.  At the barricades. , 1997, Nursing standard (Royal College of Nursing (Great Britain) : 1987).