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Volumn 13, Issue 5, 2012, Pages 371-376

From patients to partners: Participant-centric initiatives in biomedical research

Author keywords

[No Author keywords available]

Indexed keywords

BIOINFORMATICS; COST EFFECTIVENESS ANALYSIS; HEALTH CARE PRACTICE; HEALTH CARE QUALITY; HUMAN; INFORMED CONSENT; INTERPERSONAL COMMUNICATION; MEDICAL RESEARCH; PARTICIPANT CENTER INITIATIVE; PATIENT PARTICIPATION; PRIORITY JOURNAL; REVIEW; SOCIAL MEDIA;

EID: 84859900558     PISSN: 14710056     EISSN: 14710064     Source Type: Journal    
DOI: 10.1038/nrg3218     Document Type: Review
Times cited : (239)

References (29)
  • 1
    • 68149103125 scopus 로고    scopus 로고
    • Consenting in population genomics as an open communication process
    • Mascalzoni, D. et al. Consenting in population genomics as an open communication process. Stud. Ethics Law Tech. 3, 2 (2009).
    • (2009) Stud. Ethics Law Tech. , vol.3 , pp. 2
    • Mascalzoni, D.1
  • 2
    • 38549085235 scopus 로고    scopus 로고
    • Research ethics and the challenge of whole-genome sequencing
    • McGuire, A., Caulfield, T. & Cho, M. Research ethics and the challenge of whole-genome sequencing. Nature Rev. Genet. 9, 152-156 (2008).
    • (2008) Nature Rev. Genet. , vol.9 , pp. 152-156
    • McGuire, A.1    Caulfield, T.2    Cho, M.3
  • 3
    • 84859900686 scopus 로고    scopus 로고
    • International biobanking regulations: The promise and the pitfalls
    • Wagstaff, A. International biobanking regulations: the promise and the pitfalls. Cancer World 42, 23-29 (2011).
    • (2011) Cancer World , vol.42 , pp. 23-29
    • Wagstaff, A.1
  • 4
    • 80054767343 scopus 로고    scopus 로고
    • Data protection and sample management in biobanking-a legal dichotomy
    • Schulte in den Bäumen, T., Paci, D. & Ibarreta, D. Data protection and sample management in biobanking-a legal dichotomy. Genomics Soc. Policy 6, 33-46 (2010).
    • (2010) Genomics Soc. Policy , vol.6 , pp. 33-46
    • Schulte In Den Bäumen, T.1    Paci, D.2    Ibarreta, D.3
  • 5
    • 80053307605 scopus 로고    scopus 로고
    • From single biobanks to international networks: Developing e-governance
    • Kaye, J. From single biobanks to international networks: developing e-governance. Hum. Genet. 130, 377-382 (2011).
    • (2011) Hum. Genet. , vol.130 , pp. 377-382
    • Kaye, J.1
  • 7
    • 84859922074 scopus 로고    scopus 로고
    • The tension between data sharing and the protection of privacy in genomics research
    • Mar (doi:10.1146/annurev-genom-082410-101454)
    • Kaye, J. The tension between data sharing and the protection of privacy in genomics research. Annu. Rev. Genomics Hum. Genet. 9 Mar 2012 (doi:10.1146/annurev-genom-082410-101454).
    • (2012) Annu. Rev. Genomics Hum. Genet. , vol.9
    • Kaye, J.1
  • 8
    • 79952056163 scopus 로고    scopus 로고
    • Using patient data for research without consent
    • Brown, I., Brown, L. & Korff, D. Using patient data for research without consent. Law Inn. Tech. 2, 219-258 (2010).
    • (2010) Law Inn. Tech. , vol.2 , pp. 219-258
    • Brown, I.1    Brown, L.2    Korff, D.3
  • 9
    • 77955662068 scopus 로고    scopus 로고
    • Genomic research and wide data sharing: Views of prospective participants
    • Trinidad, S. B. et al. Genomic research and wide data sharing: views of prospective participants. Genet. Med. 12, 486-495 (2010).
    • (2010) Genet. Med. , vol.12 , pp. 486-495
    • Trinidad, S.B.1
  • 10
    • 79851496258 scopus 로고    scopus 로고
    • Electronic consent channels: Preserving patient privacy without handcuffing researchers
    • Shelton, R. H. Electronic consent channels: preserving patient privacy without handcuffing researchers. Sci. Transl. Med. 3, 69cm4 (2011).
    • (2011) Sci. Transl. Med. , vol.3
    • Shelton, R.H.1
  • 11
    • 79851486605 scopus 로고    scopus 로고
    • Power to the people: Participant ownership of clinical trial data
    • Terry, S. F. & Terry, P. F. Power to the people: participant ownership of clinical trial data. Sci. Transl. Med. 3, 69cm3 (2011).
    • (2011) Sci. Transl. Med. , vol.3
    • Terry, S.F.1    Terry, P.F.2
  • 12
    • 54449097962 scopus 로고    scopus 로고
    • Whose personal control? Creating private, personally controlled health records for pediatric and adolescent patients
    • Bourgeois, F. C., Taylor, P. L., Emans, S. J., Nigrin, D. J. & Mandl, K. D. Whose personal control? Creating private, personally controlled health records for pediatric and adolescent patients. J. Am. Med. Inform. Assoc. 15, 737-743 (2008).
    • (2008) J. Am. Med. Inform. Assoc. , vol.15 , pp. 737-743
    • Bourgeois, F.C.1    Taylor, P.L.2    Emans, S.J.3    Nigrin, D.J.4    Mandl, K.D.5
  • 13
    • 7444249735 scopus 로고    scopus 로고
    • Clinical information systems: Instant ubiquitous clinical data for error reduction and improved clinical outcomes
    • Feied, C. F. et al. Clinical information systems: instant ubiquitous clinical data for error reduction and improved clinical outcomes. Acad. Emerg. Med. 11, 1162-1169 (2004).
    • (2004) Acad. Emerg. Med. , vol.11 , pp. 1162-1169
    • Feied, C.F.1
  • 14
    • 78249245993 scopus 로고    scopus 로고
    • Patients providing the answers: Narrowing the gap in data quality for emergency care
    • Porter, S. C., Forbes, P., Manzi, S. & Kalish, L. Patients providing the answers: narrowing the gap in data quality for emergency care. Qual. Saf. Health Care 19, 1-5 (2010).
    • (2010) Qual. Saf. Health Care , vol.19 , pp. 1-5
    • Porter, S.C.1    Forbes, P.2    Manzi, S.3    Kalish, L.4
  • 15
    • 34548719925 scopus 로고    scopus 로고
    • Effects of an integrated clinical information system on medication safety in a multi-hospital setting
    • Mahoney, C. D., Berard-Collins, C. M., Coleman, R., Amaral, J. F. & Cotter, C. M. Effects of an integrated clinical information system on medication safety in a multi-hospital setting. Am. J. Health Syst. Pharm. 64, 1969-1977 (2007).
    • (2007) Am. J. Health Syst. Pharm. , vol.64 , pp. 1969-1977
    • Mahoney, C.D.1    Berard-Collins, C.M.2    Coleman, R.3    Amaral, J.F.4    Cotter, C.M.5
  • 16
    • 33845387245 scopus 로고    scopus 로고
    • Benefits of interoperability: A closer look at the estimates
    • Jan (doi:10.1377/hlthaff.w5.22)
    • Baker, L. C. Benefits of interoperability: a closer look at the estimates. Health Aff. 19 Jan 2005 (doi:10.1377/hlthaff.w5.22).
    • (2005) Health Aff. , vol.19
    • Baker, L.C.1
  • 17
    • 33644862103 scopus 로고    scopus 로고
    • The value of health care information exchange and interoperability
    • Jan (doi:10.1377/hlthaff.w5.10)
    • Walker, J. et al. The value of health care information exchange and interoperability. Health Aff. 19 Jan 2005 (doi:10.1377/hlthaff.w5.10).
    • (2005) Health Aff. , vol.19
    • Walker, J.1
  • 18
    • 34748922224 scopus 로고    scopus 로고
    • The value of healthcare information exchange and interoperability in New York state
    • Hook, J. M., Pan, E., Adler-Milstein, J., Bu, D. &Walker, J. The value of healthcare information exchange and interoperability in New York state. AMIA Annu. Symp. Proc. 2006, 953 (2006).
    • (2006) AMIA Annu. Symp. Proc. , vol.2006 , pp. 953
    • Hook, J.M.1    Pan, E.2    Adler-Milstein, J.3    Bu, D.4    Walker, J.5
  • 19
    • 0031991562 scopus 로고    scopus 로고
    • The benefits of sharing clinical information
    • Teich, J. M. The benefits of sharing clinical information. Ann. Emerg. Med. 31, 274-276 (1998).
    • (1998) Ann. Emerg. Med. , vol.31 , pp. 274-276
    • Teich, J.M.1
  • 20
    • 79955778144 scopus 로고    scopus 로고
    • Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm
    • Wicks, P., Vaughan, T. E., Massagli, M. P. &Heywood, J. Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm. Nature Biotech. 29, 411-414 (2011).
    • (2011) Nature Biotech. , vol.29 , pp. 411-414
    • Wicks, P.1    Vaughan, T.E.2    Massagli, M.P.3    Heywood, J.4
  • 21
    • 79959841853 scopus 로고    scopus 로고
    • Web-based genome-wide association study identifies two novel loci and a substantial genetic component for Parkinson's disease
    • Do, C. B. et al. Web-based genome-wide association study identifies two novel loci and a substantial genetic component for Parkinson's disease. PLoS Genet. 7, e1002141 (2011).
    • (2011) PLoS Genet. , vol.7
    • Do, C.B.1
  • 22
    • 79952212273 scopus 로고    scopus 로고
    • BMA warns against letting patients have access to their electronic records
    • Cross, M. BMA warns against letting patients have access to their electronic records. BMJ 342, 206 (2011).
    • (2011) BMJ , vol.342 , pp. 206
    • Cross, M.1
  • 23
    • 84859922378 scopus 로고    scopus 로고
    • The BMA has adopted an old fashioned, paternalistic, and misguided policy by warning against patients having access to their electronic records
    • Al-Ubaydli, M. A. & Smith, R. The BMA has adopted an old fashioned, paternalistic, and misguided policy by warning against patients having access to their electronic records. BMJ Rapid Response [online], http://www.bmj.com/ rapid-response/2011/11/03/bma-has-adopted-old-fashioned-paternalistic- andmisguided-policy-warning-a (2011).
    • (2011) BMJ Rapid Response [Online]
    • Al-Ubaydli, M.A.1    Smith, R.2
  • 24
    • 84859922379 scopus 로고    scopus 로고
    • Personal data for public good: Using health information in medical research
    • The Academy of Medical Sciences. Personal data for public good: using health information in medical research. The Academy of Medical Sciences [online], www.acmedsci.ac.uk/p99puid62.html (2006).
    • (2006) The Academy of Medical Sciences [Online]
  • 25
    • 84859922075 scopus 로고    scopus 로고
    • Public attitudes to research governance: A qualitative study in a deliberative context
    • Wellcome Trust. Public attitudes to research governance: a qualitative study in a deliberative context. Wellcome Trust [online], http://www.wellcome. ac.uk/stellent/groups/corporatesite/@policy-communications/documents/ web-document/wtx038443.pdf (2007).
    • (2007) Wellcome Trust [Online]
  • 26
    • 84859922076 scopus 로고    scopus 로고
    • The use of personal health information in medical research
    • Medical Research Council. The use of personal health information in medical research. Medical Research Council [online], www.mrc.ac.uk/Utilities/ Documentrecord/index.htm?d=MRC003810 (2007).
    • (2007) Medical Research Council [Online]
  • 27
    • 84859882214 scopus 로고    scopus 로고
    • NHS Connecting for Health and the National Programme for Information Technology
    • Khong, S.-Y., Currie, I. & Eccles, S. NHS Connecting for Health and the National Programme for Information Technology. Obstetrician Gynaecol. 10, 27-32 (2008).
    • (2008) Obstetrician Gynaecol. , vol.10 , pp. 27-32
    • Khong, S.-Y.1    Currie, I.2    Eccles, S.3
  • 28
    • 84859898297 scopus 로고    scopus 로고
    • Privacy and prejudice: Young people's views on the development and use of electronic patient records
    • The Royal Academy of Engineering. Privacy and prejudice: young people's views on the development and use of electronic patient records. The Royal Academy of Engineering [online], http://www.raeng.org.uk/news/publications/list/ reports/Privacy-and-Prejudice-EPR-views.pdf (2010).
    • (2010) The Royal Academy of Engineering [Online]
  • 29
    • 77954167176 scopus 로고    scopus 로고
    • Web-based, participant-driven studies yield novel genetic associations for common traits
    • Eriksson, N. et al. Web-based, participant-driven studies yield novel genetic associations for common traits. PLoS Genet. 6, e1000993 (2010).
    • (2010) PLoS Genet. , vol.6
    • Eriksson, N.1


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