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Volumn 3, Issue 1, 2015, Pages

Dynamic Consent: A Possible Solution to Improve Patient Confidence and Trust in How Electronic Patient Records Are Used in Medical Research

Author keywords

Care.data; Confidentiality; Data linkage; Dynamic consent; Electronic patient record (epr); Governance; Medical research; Nhs; Privacy

Indexed keywords


EID: 84973387103     PISSN: None     EISSN: 22919694     Source Type: Journal    
DOI: 10.2196/medinform.3525     Document Type: Review
Times cited : (103)

References (40)
  • 1
    • 85102487292 scopus 로고    scopus 로고
    • NHS Confederation. [accessed 2014-05-08] [WebCite Cache ID 6PPvKJhgR]
    • NHS Confederation. Key statistics on the NHSURL: Http://www.nhsconfed.org/priorities/political-engagement/Pages/NHS-statistics.aspx [accessed 2014-05-08] [WebCite Cache ID 6PPvKJhgR].
    • Key statistics on the NHSURL
  • 2
    • 18744371861 scopus 로고    scopus 로고
    • A case-control study of autism and mumps-measles-rubella vaccination using the general practice research database: Design and methodology
    • [FREE Full text] [Medline: 11231881]
    • Smeeth L, Hall AJ, Fombonne E, Rodrigues LC, Huang X, Smith PG. A case-control study of autism and mumps-measles-rubella vaccination using the general practice research database: Design and methodology. BMC Public Health 2001;1:2 [FREE Full text] [Medline: 11231881].
    • (2001) BMC Public Health , vol.1 , pp. 2
    • Smeeth, L1    Hall, AJ2    Fombonne, E3    Rodrigues, LC4    Huang, X5    Smith, PG.6
  • 3
    • 84878431391 scopus 로고    scopus 로고
    • Unlocking the research potential of the GP electronic care record
    • Jun; [FREE Full text] [doi] [Medline: 23735377]
    • Wallace P, Delaney B, Sullivan F. Unlocking the research potential of the GP electronic care record. Br J Gen Pract 2013 Jun;63(611):284-285 [FREE Full text] [doi: 10.3399/bjgp13X668023] [Medline: 23735377].
    • (2013) Br J Gen Pract , vol.63 , Issue.611 , pp. 284-285
    • Wallace, P1    Delaney, B2    Sullivan, F.3
  • 4
  • 5
    • 84920936210 scopus 로고    scopus 로고
    • ISD Scotland. [accessed 2014-09-04] [WebCite Cache ID 6SKgacAzG]
    • ISD Scotland. Information services divisionURL: Http://www.isdscotland.org/[accessed 2014-09-04] [WebCite Cache ID 6SKgacAzG].
    • Information services divisionURL
  • 6
    • 84905268983 scopus 로고    scopus 로고
    • A case study of the secure anonymous information linkage (SAIL) gateway: A privacy-protecting remote access system for health-related research and evaluation
    • Aug;: [FREE Full text] [doi] [Medline: 24440148]
    • Jones KH, Ford DV, Jones C, Dsilva R, Thompson S, Brooks CJ, et al. A case study of the secure anonymous information linkage (SAIL) gateway: A privacy-protecting remote access system for health-related research and evaluation. J Biomed Inform 2014 Aug;50:196-204 [FREE Full text] [doi: 10.1016/j.jbi.2014.01.003] [Medline: 24440148].
    • (2014) J Biomed Inform , vol.50 , pp. 196-204
    • Jones, KH1    Ford, DV2    Jones, C3    Dsilva, R4    Thompson, S5    Brooks, CJ6
  • 8
    • 85102486249 scopus 로고    scopus 로고
    • Ipsos Mori/AMRC. Jun 9. [accessed 2014-05-08] [WebCite Cache ID 6PPvjPGgw]
    • Ipsos Mori/AMRC. 2011 Jun 9. Public support for research in the NHSURL: Http://www.ipsos-mori.com/researchpublications/researcharchive/2811/Public-support-for-research-in-the-NHS.aspx [accessed 2014-05-08] [WebCite Cache ID 6PPvjPGgw].
    • (2011) Public support for research in the NHSURL
  • 9
    • 85102494691 scopus 로고    scopus 로고
    • Information governance: Exploring public attitudes to electronic health records
    • Information governance: Exploring public attitudes to electronic health recordsURL: [WebCite Cache ID 6Uj6MNtFI]
    • Nicholson L. Information governance: Exploring public attitudes to electronic health records. 2009. Information governance: Exploring public attitudes to electronic health recordsURL: Http://www.scimp.scot.nhs.uk/wp-content/uploads/documents/ECS/CFS%20Focus%20Group%20Final%20report%20v3%20Aug%2008.pdf[WebCite Cache ID 6Uj6MNtFI].
    • (2009)
    • Nicholson, L.1
  • 10
    • 0642307855 scopus 로고    scopus 로고
    • The use of medical records in research: What do patients want?
    • [Medline: 14626550]
    • Kass NE, Natowicz MR, Hull SC, Faden RR, Plantinga L, Gostin LO, et al. The use of medical records in research: What do patients want? J Law Med Ethics 2003;31(3):429-433. [Medline: 14626550].
    • (2003) J Law Med Ethics , vol.31 , Issue.3 , pp. 429-433
    • Kass, NE1    Natowicz, MR2    Hull, SC3    Faden, RR4    Plantinga, L5    Gostin, LO6
  • 11
    • 33646488532 scopus 로고    scopus 로고
    • National Cancer Registry. National survey of British public's views on use of identifiable medical data by the National Cancer Registry
    • May 6; [FREE Full text] [doi] [Medline: 16648132]
    • Barrett G, Cassell JA, Peacock JL, Coleman MP, National Cancer Registry. National survey of British public's views on use of identifiable medical data by the National Cancer Registry. BMJ 2006 May 6;332(7549):1068-1072 [FREE Full text] [doi: 10.1136/bmj.38805.473738.7C] [Medline: 16648132].
    • (2006) BMJ , vol.332 , Issue.7549 , pp. 1068-1072
    • Barrett, G1    Cassell, JA2    Peacock, JL3    Coleman, MP4
  • 12
    • 84883330275 scopus 로고    scopus 로고
    • Patient and public views on electronic health records and their uses in the United kingdom: Cross-sectional survey
    • [FREE Full text] [doi] [Medline: 23975239]
    • Luchenski SA, Reed JE, Marston C, Papoutsi C, Majeed A, Bell D. Patient and public views on electronic health records and their uses in the United kingdom: Cross-sectional survey. J Med Internet Res 2013;15(8):e160 [FREE Full text] [doi: 10.2196/jmir.2701] [Medline: 23975239].
    • (2013) J Med Internet Res , vol.15 , Issue.8 , pp. e160
    • Luchenski, SA1    Reed, JE2    Marston, C3    Papoutsi, C4    Majeed, A5    Bell, D.6
  • 13
    • 84952008573 scopus 로고    scopus 로고
    • Consumers Health Forum of Australia. [accessed 2014-11-10] [WebCite Cache ID 6Tz1BJF7N]
    • Consumers Health Forum of Australia. 2011. eHealth and electronic health records: Current consumer researchURL: Https://www.chf.org.au/pdfs/rep/rep-691-eHealthresearch-feb11.pdf [accessed 2014-11-10] [WebCite Cache ID 6Tz1BJF7N].
    • (2011) eHealth and electronic health records: Current consumer researchURL
  • 14
    • 85102497515 scopus 로고    scopus 로고
    • Sciencewise/Ipsos MORI. [accessed 2014-05-08] [WebCite Cache ID 6PPw3Jgb4]
    • Sciencewise/Ipsos MORI. 2014. What patients and the public think about health researchURL: Http://www.hra.nhs.uk/patients-and-the-public-2/how-the-hra-works-with-patients-and-the-public/what-patients-and-the-public-think-about-health-research/[accessed 2014-05-08] [WebCite Cache ID 6PPw3Jgb4].
    • (2014) What patients and the public think about health researchURL
  • 15
    • 33646582652 scopus 로고    scopus 로고
    • Patients' attitudes towards sharing their health information
    • Jul; [doi] [Medline: 16198142]
    • Whiddett R, Hunter I, Engelbrecht J, Handy J. Patients' attitudes towards sharing their health information. Int J Med Inform 2006 Jul;75(7):530-541. [doi: 10.1016/j.ijmedinf.2005.08.009] [Medline: 16198142].
    • (2006) Int J Med Inform , vol.75 , Issue.7 , pp. 530-541
    • Whiddett, R1    Hunter, I2    Engelbrecht, J3    Handy, J.4
  • 16
    • 70350439771 scopus 로고    scopus 로고
    • Patients' attitudes toward electronic health information exchange: Qualitative study
    • [FREE Full text] [doi] [Medline: 19674960]
    • Simon SR, Evans JS, Benjamin A, Delano D, Bates DW. Patients' attitudes toward electronic health information exchange: Qualitative study. J Med Internet Res 2009;11(3):e30 [FREE Full text] [doi: 10.2196/jmir.1164] [Medline: 19674960].
    • (2009) J Med Internet Res , vol.11 , Issue.3 , pp. e30
    • Simon, SR1    Evans, JS2    Benjamin, A3    Delano, D4    Bates, DW.5
  • 17
    • 85102525091 scopus 로고    scopus 로고
    • National Academy of Sciences. Feb. Social networking site and the continuously learning health system: A surveyURL: [WebCite Cache ID 6Uj6VDZ1b]
    • Grajales F, Clifford D, Loupos P, Okun S, Quattrone S, Simon M. National Academy of Sciences. Feb. 2014. Social networking site and the continuously learning health system: A surveyURL: Http://www.iom.edu/Global/Perspectives/2014/~/media/Files/Perspectives-Files/2014/Discussion-Papers/VSRT-PatientDataSharing.pdf[WebCite Cache ID 6Uj6VDZ1b].
    • (2014)
    • Grajales, F1    Clifford, D2    Loupos, P3    Okun, S4    Quattrone, S5    Simon, M.6
  • 18
    • 67449144386 scopus 로고    scopus 로고
    • European biologicals registers: Methodology, selected results and perspectives
    • Aug; [doi] [Medline: 18647854]
    • Zink A, Askling J, Dixon WG, Klareskog L, Silman AJ, Symmons DP. European biologicals registers: Methodology, selected results and perspectives. Ann Rheum Dis 2009 Aug;68(8):1240-1246. [doi: 10.1136/ard.2008.091926] [Medline: 18647854].
    • (2009) Ann Rheum Dis , vol.68 , Issue.8 , pp. 1240-1246
    • Zink, A1    Askling, J2    Dixon, WG3    Klareskog, L4    Silman, AJ5    Symmons, DP.6
  • 20
    • 84899621977 scopus 로고    scopus 로고
    • Use of data linkage to measure the population health effect of non-health-care interventions
    • Apr 26; [doi] [Medline: 24290768]
    • Lyons RA, Ford DV, Moore L, Rodgers SE. Use of data linkage to measure the population health effect of non-health-care interventions. Lancet 2014 Apr 26;383(9927):1517-1519. [doi: 10.1016/S0140-6736(13)61750-X] [Medline: 24290768].
    • (2014) Lancet , vol.383 , Issue.9927 , pp. 1517-1519
    • Lyons, RA1    Ford, DV2    Moore, L3    Rodgers, SE.4
  • 23
    • 84902799705 scopus 로고    scopus 로고
    • Finding the missing link for big biomedical data
    • Jun 25; [doi] [Medline: 24854141]
    • Weber GM, Mandl KD, Kohane IS. Finding the missing link for big biomedical data. JAMA 2014 Jun 25;311(24):2479-2480. [doi: 10.1001/jama.2014.4228] [Medline: 24854141].
    • (2014) JAMA , vol.311 , Issue.24 , pp. 2479-2480
    • Weber, GM1    Mandl, KD2    Kohane, IS.3
  • 24
    • 84872459720 scopus 로고    scopus 로고
    • Identifying personal genomes by surname inference
    • Jan 18; [FREE Full text] [doi] [Medline: 23329047]
    • Gymrek M, McGuire AL, Golan D, Halperin E, Erlich Y. Identifying personal genomes by surname inference. Science 2013 Jan 18;339(6117):321-324 [FREE Full text] [doi: 10.1126/science.1229566] [Medline: 23329047].
    • (2013) Science , vol.339 , Issue.6117 , pp. 321-324
    • Gymrek, M1    McGuire, AL2    Golan, D3    Halperin, E4    Erlich, Y.5
  • 25
    • 84897514458 scopus 로고    scopus 로고
    • Care.data, consent, and confidentiality
    • Apr 5; [doi] [Medline: 24703557]
    • Shaw D. Care.data, consent, and confidentiality. Lancet 2014 Apr 5;383(9924):1205. [doi: 10.1016/S0140-6736(14)60594-8] [Medline: 24703557].
    • (2014) Lancet , vol.383 , Issue.9924 , pp. 1205
    • Shaw, D.1
  • 27
    • 1342266572 scopus 로고    scopus 로고
    • Public attitudes towards the use of primary care patient record data in medical research without consent: A qualitative study
    • Feb; [FREE Full text] [Medline: 14872086]
    • Robling MR, Hood K, Houston H, Pill R, Fay J, Evans HM. Public attitudes towards the use of primary care patient record data in medical research without consent: A qualitative study. J Med Ethics 2004 Feb;30(1):104-109 [FREE Full text] [Medline: 14872086].
    • (2004) J Med Ethics , vol.30 , Issue.1 , pp. 104-109
    • Robling, MR1    Hood, K2    Houston, H3    Pill, R4    Fay, J5    Evans, HM.6
  • 28
    • 0035798841 scopus 로고    scopus 로고
    • Public standards and patients' control: How to keep electronic medical records accessible but private
    • Feb 3; [FREE Full text] [Medline: 11157533]
    • Mandl KD, Szolovits P, Kohane IS. Public standards and patients' control: How to keep electronic medical records accessible but private. BMJ 2001 Feb 3;322(7281):283-287 [FREE Full text] [Medline: 11157533].
    • (2001) BMJ , vol.322 , Issue.7281 , pp. 283-287
    • Mandl, KD1    Szolovits, P2    Kohane, IS.3
  • 29
    • 85102502628 scopus 로고    scopus 로고
    • Royal College of General Practitioners. dataURL: [accessed 2014-05-08] [WebCite Cache ID 6PPwTg9W4]
    • Royal College of General Practitioners. RCGP. RCGP voices concerns about care.dataURL: Http://www.rcgp.org.uk/news/2014/february/rcgp-voices-concerns-about-care-data.aspx [accessed 2014-05-08] [WebCite Cache ID 6PPwTg9W4].
    • RCGP. RCGP voices concerns about care
  • 30
    • 84893849889 scopus 로고    scopus 로고
    • Department of Health. Apr 24. [accessed 2014-05-08] [WebCite Cache ID 6PPwa2tJP]
    • Department of Health. Apr 24. 2013. Caldicott review: Information governance in the health and care systemURL: Https://www.gov.uk/government/publications/the-information-governance-review [accessed 2014-05-08] [WebCite Cache ID 6PPwa2tJP].
    • (2013) Caldicott review: Information governance in the health and care systemURL
  • 31
    • 84894162879 scopus 로고    scopus 로고
    • Controversy surrounds England's new NHS database
    • Feb 22; [Medline: 24567969]
    • Kirby T. Controversy surrounds England's new NHS database. Lancet 2014 Feb 22;383(9918):681. [Medline: 24567969].
    • (2014) Lancet , vol.383 , Issue.9918 , pp. 681
    • Kirby, T.1
  • 33
    • 84893864725 scopus 로고    scopus 로고
    • A dynamic model of patient consent to sharing of medical record data
    • [Medline: 24500352]
    • Dixon WG, Spencer K, Williams H, Sanders C, Lund D, Whitley EA, et al. A dynamic model of patient consent to sharing of medical record data. BMJ 2014;348:g1294. [Medline: 24500352].
    • (2014) BMJ , vol.348 , pp. g1294
    • Dixon, WG1    Spencer, K2    Williams, H3    Sanders, C4    Lund, D5    Whitley, EA6
  • 34
    • 84921382128 scopus 로고    scopus 로고
    • Dynamic consent: A patient interface for twenty-first century research networks
    • May 7. [doi] [Medline: 24801761]
    • Kaye J, Whitley EA, Lund D, Morrison M, Teare H, Melham K. Dynamic consent: A patient interface for twenty-first century research networks. Eur J Hum Genet 2014 May 7. [doi: 10.1038/ejhg.2014.71] [Medline: 24801761].
    • (2014) Eur J Hum Genet
    • Kaye, J1    Whitley, EA2    Lund, D3    Morrison, M4    Teare, H5    Melham, K.6
  • 35
    • 85102509332 scopus 로고    scopus 로고
    • EnCoRe Project. [accessed 2014-05-07] [WebCite Cache ID 6UkBdSgvA]
    • EnCoRe Project. 2014. EnCoRe: Ensuring consent & revocationURL: Http://www.hpl.hp.com/breweb/encoreproject/index. html [accessed 2014-05-07] [WebCite Cache ID 6UkBdSgvA].
    • (2014) EnCoRe: Ensuring consent & revocationURL
  • 37
    • 85020598353 scopus 로고
    • Identity-based cryptosystems and signature schemes
    • Blakely GR, Chaum D, editors. Berlin: Springer-Verlag
    • Shamir A. Identity-based cryptosystems and signature schemes. In: Blakely GR, Chaum D, editors. Advances in cryptology: Proceedings of CRYPTO 84. Berlin: Springer-Verlag; 1985:47-53.
    • (1985) Advances in cryptology: Proceedings of CRYPTO 84 , pp. 47-53
    • Shamir, A.1
  • 39
    • 85102488336 scopus 로고    scopus 로고
    • How to run Turing machines on encrypted data
    • [accessed 2014-09-04] [WebCite Cache ID 6SLGbXz2T]
    • Goldwasser S, Kalai Y, Popa RA, Vaikuntanathan V. How to run Turing machines on encrypted data. Zeldovich N (2013)URL: Http://eprint.iacr.org/2013/229.pdf [accessed 2014-09-04] [WebCite Cache ID 6SLGbXz2T].
    • (2013) Zeldovich N
    • Goldwasser, S1    Kalai, Y2    Popa, RA3    Vaikuntanathan, V.4
  • 40
    • 78149492229 scopus 로고    scopus 로고
    • 'Never heard of it'-understanding the public's lack of awareness of a new electronic patient record
    • Dec; [doi] [Medline: 20579117]
    • Bratan T, Stramer K, Greenhalgh T. 'Never heard of it'-understanding the public's lack of awareness of a new electronic patient record. Health Expect 2010 Dec;13(4):379-391. [doi: 10.1111/j.1369-7625.2010.00608.x] [Medline: 20579117].
    • (2010) Health Expect , vol.13 , Issue.4 , pp. 379-391
    • Bratan, T1    Stramer, K2    Greenhalgh, T.3


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