메뉴 건너뛰기




Volumn 82, Issue 12, 2013, Pages 1136-1143

Giving patients granular control of personal health information: Using an ethics 'Points to Consider' to inform informatics system designers

Author keywords

Computerized; Electronic health records; Ethics; Medical records systems; Patient access to records; Physician patient relations; Privacy

Indexed keywords

COMPUTERIZED; ELECTRONIC HEALTH RECORD; ETHICS; MEDICAL RECORDS SYSTEMS; PATIENT ACCESS; PHYSICIAN-PATIENT RELATIONS;

EID: 84888201299     PISSN: 13865056     EISSN: 18728243     Source Type: Journal    
DOI: 10.1016/j.ijmedinf.2013.08.010     Document Type: Article
Times cited : (25)

References (51)
  • 2
    • 43949086861 scopus 로고    scopus 로고
    • The ethics of information: absolute risk reduction and patient understanding of screening
    • Schwartz P.H., Meslin E.M. The ethics of information: absolute risk reduction and patient understanding of screening. J. Gen. Intern. Med. 2008, 23(6):867-870.
    • (2008) J. Gen. Intern. Med. , vol.23 , Issue.6 , pp. 867-870
    • Schwartz, P.H.1    Meslin, E.M.2
  • 4
    • 50349098191 scopus 로고    scopus 로고
    • Privacy issues in clinical genomic medicine, or Marcus Welby, M.D., meets the $1000 genome
    • Alpert S. Privacy issues in clinical genomic medicine, or Marcus Welby, M.D., meets the $1000 genome. Camb. Q. Healthc. Ethics 2008, 17(4):373-384.
    • (2008) Camb. Q. Healthc. Ethics , vol.17 , Issue.4 , pp. 373-384
    • Alpert, S.1
  • 5
    • 84888203707 scopus 로고    scopus 로고
    • Available from:, (cited 2013 April 13)
    • Saul S. Drowning in Data (Internet) 2002, Available from:, (cited 2013 April 13). http://www.a-website.org/mnemosyne/no_signposts/01tsunami.html.
    • (2002) Drowning in Data (Internet)
    • Saul, S.1
  • 6
    • 33947623659 scopus 로고    scopus 로고
    • Social, ethical and legal barriers to e-health
    • May-June (5/6)
    • Anderson J.G. Social, ethical and legal barriers to e-health. Int. J. Med. Inform. 2007, 76(May-June (5/6)):480-483.
    • (2007) Int. J. Med. Inform. , vol.76 , pp. 480-483
    • Anderson, J.G.1
  • 7
    • 77955214465 scopus 로고    scopus 로고
    • Barriers to the acceptance of electronic medical records by physicians from systematic review to taxonomy and interventions
    • Boonstra A., Broekhuis M. Barriers to the acceptance of electronic medical records by physicians from systematic review to taxonomy and interventions. BMC Health Serv. Res. 2010, 10:231.
    • (2010) BMC Health Serv. Res. , vol.10 , pp. 231
    • Boonstra, A.1    Broekhuis, M.2
  • 8
    • 84871893206 scopus 로고    scopus 로고
    • Patients want granular privacy control over health information in electronic medical records
    • Caine K., Hanania R. Patients want granular privacy control over health information in electronic medical records. J. Am. Med. Inform. Assoc. 2013, 20(1):7-15.
    • (2013) J. Am. Med. Inform. Assoc. , vol.20 , Issue.1 , pp. 7-15
    • Caine, K.1    Hanania, R.2
  • 10
    • 84871886591 scopus 로고    scopus 로고
    • Biomedical data privacy: problems, perspectives, and recent advances
    • Malin B.A., Emam K.E., O'Keefe C.M. Biomedical data privacy: problems, perspectives, and recent advances. J. Am. Med. Inform. Assoc. 2013, 20(1):2-6.
    • (2013) J. Am. Med. Inform. Assoc. , vol.20 , Issue.1 , pp. 2-6
    • Malin, B.A.1    Emam, K.E.2    O'Keefe, C.M.3
  • 11
    • 78751706184 scopus 로고    scopus 로고
    • Views on health information sharing and privacy from primary care practices using electronic medical records
    • February (2)
    • Perera G., Holbrook A., Thabane L., Foster G., Willison D.J. Views on health information sharing and privacy from primary care practices using electronic medical records. Int. J. Med. Inform. 2011, 80(February (2)):94-101.
    • (2011) Int. J. Med. Inform. , vol.80 , pp. 94-101
    • Perera, G.1    Holbrook, A.2    Thabane, L.3    Foster, G.4    Willison, D.J.5
  • 12
  • 13
    • 0037328063 scopus 로고    scopus 로고
    • Weighing the care: patients' perceptions of physician care as a function of gender and weight
    • Hebl M.R., Xu J., Mason M.F. Weighing the care: patients' perceptions of physician care as a function of gender and weight. Int. J. Obes. Relat. Metab. Disord. 2003, 27(2):269-275.
    • (2003) Int. J. Obes. Relat. Metab. Disord. , vol.27 , Issue.2 , pp. 269-275
    • Hebl, M.R.1    Xu, J.2    Mason, M.F.3
  • 14
    • 0029895106 scopus 로고    scopus 로고
    • Survey of HIV patients' views on confidentiality non-discrimination policies in general practice
    • Shaw M., Tomlinson D., Higginson I. Survey of HIV patients' views on confidentiality non-discrimination policies in general practice. BMJ 1996, 312(7044):1463-1464.
    • (1996) BMJ , vol.312 , Issue.7044 , pp. 1463-1464
    • Shaw, M.1    Tomlinson, D.2    Higginson, I.3
  • 15
    • 58749093008 scopus 로고    scopus 로고
    • Global pattern of experienced and anticipated discrimination against people with schizophrenia: a cross-sectional survey
    • Indigo Study Group
    • Thornicroft G., Brohan E., Rose D., Sartorius N., Leese M. Global pattern of experienced and anticipated discrimination against people with schizophrenia: a cross-sectional survey. Lancet 2009, 373(9661):408-415. Indigo Study Group.
    • (2009) Lancet , vol.373 , Issue.9661 , pp. 408-415
    • Thornicroft, G.1    Brohan, E.2    Rose, D.3    Sartorius, N.4    Leese, M.5
  • 17
    • 64349086599 scopus 로고    scopus 로고
    • Stimulating the adoption of health information technology
    • Blumenthal D. Stimulating the adoption of health information technology. N. Engl. J. Med. 2009, 360(15):1477-1479.
    • (2009) N. Engl. J. Med. , vol.360 , Issue.15 , pp. 1477-1479
    • Blumenthal, D.1
  • 20
    • 0025579695 scopus 로고
    • Why the standard view is standard: people, not machines, understand patients' problems
    • Miller R.A. Why the standard view is standard: people, not machines, understand patients' problems. J. Med. Philos. 1990, 15(6):581-591.
    • (1990) J. Med. Philos. , vol.15 , Issue.6 , pp. 581-591
    • Miller, R.A.1
  • 21
    • 84888202179 scopus 로고    scopus 로고
    • Ethics, information technology, and public health: duties and challenges in computational epidemiology
    • J.J. Magnusen, P. Fu, J. Aspevig (Eds.), Public Health Informatics and Information Systems, 2nd ed., Springer (forthcoming).
    • K.W. Goodman, E.M. Meslin, Ethics, information technology, and public health: duties and challenges in computational epidemiology, in: J.J. Magnusen, P. Fu, J. Aspevig (Eds.), Public Health Informatics and Information Systems, 2nd ed., Springer (forthcoming).
    • Goodman, K.W.1    Meslin, E.M.2
  • 22
    • 84888197279 scopus 로고    scopus 로고
    • Title XIII (Health Information Technology for Economic and Clinical Health Act, "HITECH") of the American Recovery and Reinvestment Act of 2009 ("AARA"), Pub. L. No. 111-5, 123 Stat. 115, 226-79 (codified in scattered sections of 42 U.S.C.).
    • Title XIII (Health Information Technology for Economic and Clinical Health Act, "HITECH") of the American Recovery and Reinvestment Act of 2009 ("AARA"), Pub. L. No. 111-5, 123 Stat. 115, 226-79, 2009 (codified in scattered sections of 42 U.S.C.).
    • (2009)
  • 23
    • 84888200765 scopus 로고    scopus 로고
    • Health Insurance Portability and Accountability Act of 1996, Pub. L. No. 104-191 (codified in scattered sections of title 42 U.S. Code); 45 C.F.R. parts 160 and 164 (HIPAA Privacy and Security Rules).
    • Health Insurance Portability and Accountability Act of 1996, Pub. L. No. 104-191, 1996 (codified in scattered sections of title 42 U.S. Code); 45 C.F.R. parts 160 and 164 (HIPAA Privacy and Security Rules).
    • (1996)
  • 24
    • 79952960494 scopus 로고    scopus 로고
    • President's Council of Advisors on Science and Technology (PCAST), PCAST, Executive Office of the President, U.S., Washington, DC, Available from:, (cited 2012 February 15)
    • President's Council of Advisors on Science & Technology (PCAST) Report to the President Realizing the Full Potential of Health Information Technology to Improve Healthcare for Americans: A Path Forward 2010, PCAST, Executive Office of the President, U.S., Washington, DC, 108 pp. Available from:, (cited 2012 February 15). http://www.whitehouse.gov/sites/default/files/microsites/ostp/pcast-health-it-report.pdf.
    • (2010) Report to the President Realizing the Full Potential of Health Information Technology to Improve Healthcare for Americans: A Path Forward , pp. 108
  • 25
    • 84888199648 scopus 로고    scopus 로고
    • Health IT Policy Committee, Privacy and Security Tiger Team, Letter to David Blumenthal, Chairman of the Office of the National Coordinator for Health IT, August 19 (cited 2013 March 20). Available from:
    • Health IT Policy Committee, Privacy and Security Tiger Team, Letter to David Blumenthal, Chairman of the Office of the National Coordinator for Health IT, August 19, 2010 (cited 2013 March 20). Available from: http://www.healthit.gov/sites/default/files/tigerteamrecommendationletter8-17.pdf.
    • (2010)
  • 27
    • 0026566658 scopus 로고
    • Four models of the physician-patient relationship
    • Emanuel E.J., Emanuel L.L. Four models of the physician-patient relationship. JAMA 1992, 267(16):2221-2226.
    • (1992) JAMA , vol.267 , Issue.16 , pp. 2221-2226
    • Emanuel, E.J.1    Emanuel, L.L.2
  • 29
    • 84870514817 scopus 로고    scopus 로고
    • Empowering citizens with access control mechanisms to their personal health resources
    • January (1)
    • Calvillo J., Román I., Roa L.M. Empowering citizens with access control mechanisms to their personal health resources. Int. J. Med. Inform. 2013, 82(January (1)):58-72.
    • (2013) Int. J. Med. Inform. , vol.82 , pp. 58-72
    • Calvillo, J.1    Román, I.2    Roa, L.M.3
  • 31
    • 0030294266 scopus 로고    scopus 로고
    • Physician recommendations and patient autonomy: finding a balance between physician power and patient choice
    • Quill T.E., Brody H. Physician recommendations and patient autonomy: finding a balance between physician power and patient choice. Ann. Intern. Med. 1996, 125(9):763-769.
    • (1996) Ann. Intern. Med. , vol.125 , Issue.9 , pp. 763-769
    • Quill, T.E.1    Brody, H.2
  • 32
    • 77955972459 scopus 로고    scopus 로고
    • The shared decision-making continuum
    • Kon A.A. The shared decision-making continuum. JAMA 2010, 304(8):903-904.
    • (2010) JAMA , vol.304 , Issue.8 , pp. 903-904
    • Kon, A.A.1
  • 33
    • 9244234981 scopus 로고    scopus 로고
    • Shared medical decision making: problems process progress
    • McNutt R.A. Shared medical decision making: problems process progress. JAMA 2004, 292(20):2516-2518.
    • (2004) JAMA , vol.292 , Issue.20 , pp. 2516-2518
    • McNutt, R.A.1
  • 34
    • 0003746860 scopus 로고
    • Secretary's Advisory Committee on Automated Personal Data Systems, Superintendent of Documents, US Government Printing Office, Washington, DC
    • Secretary's Advisory Committee on Automated Personal Data Systems Records, Computers and the Rights of Citizens. DHEW Publication No. (OS) 73-94, Stock No. 1700-00116 1973, July, Superintendent of Documents, US Government Printing Office, Washington, DC.
    • (1973) Records, Computers and the Rights of Citizens. DHEW Publication No. (OS) 73-94, Stock No. 1700-00116
  • 35
    • 77952811382 scopus 로고    scopus 로고
    • Office of the National Coordinator for Health Information Technology (ONC), ONC, U.S. Department of Health and Human Services, Available from:, (cited 2013 March 16)
    • Office of the National Coordinator for Health Information Technology (ONC) Nationwide Privacy and Security Framework for Electronic Exchange of Individually Identifiable Health Information 2008, December, ONC, U.S. Department of Health and Human Services, Available from:, (cited 2013 March 16). http://www.healthit.gov/sites/default/files/nationwide-ps-framework-5.pdf.
    • (2008) Nationwide Privacy and Security Framework for Electronic Exchange of Individually Identifiable Health Information
  • 36
    • 84888197868 scopus 로고    scopus 로고
    • The Madrid Privacy Declaration (Internet), November, Madrid, Spain. Available from: (cited 2013 March 16).
    • The Madrid Privacy Declaration (Internet), 2009, November, Madrid, Spain. Available from: (cited 2013 March 16). http://thepublicvoice.org/madrid-declaration/.
    • (2009)
  • 37
    • 84888200522 scopus 로고    scopus 로고
    • Indiana Health Information Exchange, Indiana Network for Patient Care (Internet). Available from: (cited 2013 April 20).
    • Indiana Health Information Exchange, Indiana Network for Patient Care (Internet). Available from: (cited 2013 April 20). http://www.ihie.org/indiana-network-for-patient-care.
  • 38
    • 27644437302 scopus 로고    scopus 로고
    • The Indiana network for patient care: a working local health information infrastructure. An example of a working infrastructure collaboration that links data from five health systems and hundreds of millions of entries
    • McDonald C.J., Overhage J.M., Barnes M., Schadow G., Blevins L., Dexter P.R., Mamlin B., Committee I.M. The Indiana network for patient care: a working local health information infrastructure. An example of a working infrastructure collaboration that links data from five health systems and hundreds of millions of entries. Health Aff. (Millwood) 2005, 24(5):1214-1220.
    • (2005) Health Aff. (Millwood) , vol.24 , Issue.5 , pp. 1214-1220
    • McDonald, C.J.1    Overhage, J.M.2    Barnes, M.3    Schadow, G.4    Blevins, L.5    Dexter, P.R.6    Mamlin, B.7    Committee, I.M.8
  • 39
    • 13644269643 scopus 로고    scopus 로고
    • Faculty ownership of medical facilities: inappropriate conflict or an opportunity that benefits physicians and patients?
    • Fife R.S., Keener P., Meslin E.M., Randall M., Schiffmiller R.L. Faculty ownership of medical facilities: inappropriate conflict or an opportunity that benefits physicians and patients?. Acad. Med. 2004, 79(11):1051-1055.
    • (2004) Acad. Med. , vol.79 , Issue.11 , pp. 1051-1055
    • Fife, R.S.1    Keener, P.2    Meslin, E.M.3    Randall, M.4    Schiffmiller, R.L.5
  • 41
    • 84874216776 scopus 로고    scopus 로고
    • Ethics of implementing Electronic Health Records in developing countries: points to consider
    • Were M.C., Meslin E.M. Ethics of implementing Electronic Health Records in developing countries: points to consider. AMIA Annu. Symp. Proc. 2011, 1499-1505.
    • (2011) AMIA Annu. Symp. Proc. , pp. 1499-1505
    • Were, M.C.1    Meslin, E.M.2
  • 43
    • 84888198935 scopus 로고    scopus 로고
    • Granular control of EHRs to overcome fragmented disclosure law: how policy choices for granularity will affect clinical care, impact secondary use of health information, and alter risks for patients and providers
    • Drabiak-Syed K. Granular control of EHRs to overcome fragmented disclosure law: how policy choices for granularity will affect clinical care, impact secondary use of health information, and alter risks for patients and providers. Ind. Health Law Rev. 2013, 10(39):39-74.
    • (2013) Ind. Health Law Rev. , vol.10 , Issue.39 , pp. 39-74
    • Drabiak-Syed, K.1
  • 46
    • 59349103556 scopus 로고    scopus 로고
    • Inter-organizational future proof EHR systems: a review of the security and privacy related issues
    • March (3)
    • van der Linden H., Kalra D., Hasman A., Talmon J. Inter-organizational future proof EHR systems: a review of the security and privacy related issues. Int. J. Med. Inform. 2009, 78(March (3)):141-160.
    • (2009) Int. J. Med. Inform. , vol.78 , pp. 141-160
    • van der Linden, H.1    Kalra, D.2    Hasman, A.3    Talmon, J.4
  • 47
    • 84885096811 scopus 로고    scopus 로고
    • Deciding on ethical issues in engineering design
    • Springer, Dordrecht, P. Vermaas, P. Kroes, A. Light, S. Moore (Eds.)
    • Van Gorp A., Van de Poel I. Deciding on ethical issues in engineering design. Philosophy and Design: From Engineering to Architecture 2008, 77-104. Springer, Dordrecht. P. Vermaas, P. Kroes, A. Light, S. Moore (Eds.).
    • (2008) Philosophy and Design: From Engineering to Architecture , pp. 77-104
    • Van Gorp, A.1    Van de Poel, I.2
  • 48
    • 0023676888 scopus 로고
    • An ethics consultation service in a teaching hospital. Utilization and evaluation
    • La Puma J., Stocking C.B., Silverstein M.D., DiMartini A., Siegler M. An ethics consultation service in a teaching hospital. Utilization and evaluation. JAMA 1988, 260(6):808-811.
    • (1988) JAMA , vol.260 , Issue.6 , pp. 808-811
    • La Puma, J.1    Stocking, C.B.2    Silverstein, M.D.3    DiMartini, A.4    Siegler, M.5
  • 51
    • 84888201560 scopus 로고    scopus 로고
    • An ethics and policy agenda for biobanks and electronic health
    • Available from:
    • Meslin E.M., Goodman K.W. An ethics and policy agenda for biobanks and electronic health. Sci. Prog. 2010, February, Available from:. http://www.scienceprogress.org/2010/02/bank-on-it/.
    • (2010) Sci. Prog.
    • Meslin, E.M.1    Goodman, K.W.2


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.