메뉴 건너뛰기




Volumn 10, Issue , 2016, Pages 631-640

Patient involvement in clinical research: Why, when, and how

Author keywords

Bioethics; Clinical trials; Engagement; Patients; Research

Indexed keywords

BENEFICENCE; BIOETHICS; CLINICAL RESEARCH; CLINICAL STUDY; CLINICAL TRIAL; HUMAN; LEADERSHIP; MODEL; PATIENT PARTICIPATION;

EID: 84969900619     PISSN: None     EISSN: 1177889X     Source Type: Journal    
DOI: 10.2147/PPA.S104259     Document Type: Review
Times cited : (244)

References (90)
  • 1
    • 0030034463 scopus 로고    scopus 로고
    • Patient-centered medicine. A professional evolution
    • Laine C, Davidoff F. Patient-centered medicine. A professional evolution. JAMA. 1996;275:152-156.
    • (1996) JAMA , vol.275 , pp. 152-156
    • Laine, C.1    Davidoff, F.2
  • 2
    • 84880007361 scopus 로고    scopus 로고
    • Shared decision making
    • Lipkin M. Shared decision making. JAMA Intern Med. 2013;173:1204-1205.
    • (2013) JAMA Intern Med , vol.173 , pp. 1204-1205
    • Lipkin, M.1
  • 3
    • 78650589643 scopus 로고    scopus 로고
    • What is value in health care?
    • Porter ME. What is value in health care? N Engl J Med. 2010;363:2477-2481.
    • (2010) N Engl J Med , vol.363 , pp. 2477-2481
    • Porter, M.E.1
  • 4
    • 84878856119 scopus 로고    scopus 로고
    • Patients’ responsibility to participate in decision making and research
    • Tinetti ME, Basch E. Patients’ responsibility to participate in decision making and research. JAMA. 2013;309:2331-2332.
    • (2013) JAMA , vol.309 , pp. 2331-2332
    • Tinetti, M.E.1    Basch, E.2
  • 5
    • 79959251379 scopus 로고    scopus 로고
    • Democratizing clinical research
    • Lloyd K, White J. Democratizing clinical research. Nature. 2011;474:277-278.
    • (2011) Nature , vol.474 , pp. 277-278
    • Lloyd, K.1    White, J.2
  • 6
    • 84988891899 scopus 로고    scopus 로고
    • Beyond rhetoric: We need a strategy for patient involvement in the health service
    • Thornton S. Beyond rhetoric: we need a strategy for patient involvement in the health service. BMJ. 2014;348:g4072.
    • (2014) BMJ , vol.348
    • Thornton, S.1
  • 7
  • 8
    • 16244396101 scopus 로고    scopus 로고
    • The experiential knowledge of patients: A new resource for biomedical research?
    • Caron-Flinterman JF, Broerse JE, Bunders JF. The experiential knowledge of patients: a new resource for biomedical research? Soc Sci Med. 2005;60:2575-2584.
    • (2005) Soc Sci Med , vol.60 , pp. 2575-2584
    • Caron-Flinterman, J.F.1    Broerse, J.E.2    Bunders, J.F.3
  • 9
    • 0035799047 scopus 로고    scopus 로고
    • Involving consumers in designing, conducting, and interpreting randomised controlled trials: Questionnaire survey
    • Hanley B, Truesdale A, King A, Elbourne D, Chalmers I. Involving consumers in designing, conducting, and interpreting randomised controlled trials: questionnaire survey. BMJ. 2001;322:519-523.
    • (2001) BMJ , vol.322 , pp. 519-523
    • Hanley, B.1    Truesdale, A.2    King, A.3    Elbourne, D.4    Chalmers, I.5
  • 11
    • 0031553801 scopus 로고    scopus 로고
    • The public applauds cancer research but not how research priorities are set
    • Jenks S. The public applauds cancer research but not how research priorities are set. J Natl Cancer Inst. 1997;89:350-351.
    • (1997) J Natl Cancer Inst , vol.89 , pp. 350-351
    • Jenks, S.1
  • 12
    • 77952949439 scopus 로고    scopus 로고
    • Identifying and prioritizing uncertainties: Patient and clinician engagement in the identification of research questions
    • Elwyn G, Crowe S, Fenton M, et al. Identifying and prioritizing uncertainties: patient and clinician engagement in the identification of research questions. J Eval Clin Pract. 2010;16:627-631.
    • (2010) J Eval Clin Pract , vol.16 , pp. 627-631
    • Elwyn, G.1    Crowe, S.2    Fenton, M.3
  • 13
    • 84904393401 scopus 로고    scopus 로고
    • Engaging patients and stakeholders in research proposal review: The patient-centered outcomes research institute
    • Fleurence RL, Forsythe LP, Lauer M, et al. Engaging patients and stakeholders in research proposal review: the patient-centered outcomes research institute. Ann Intern Med. 2014;161:122-130.
    • (2014) Ann Intern Med , vol.161 , pp. 122-130
    • Fleurence, R.L.1    Forsythe, L.P.2    Lauer, M.3
  • 14
    • 84888623939 scopus 로고    scopus 로고
    • Tackling treatment uncertainties together: The evolution of the James Lind Initiative, 2003-2013
    • Chalmers I, Atkinson P, Fenton M, Firkins L, Crowe S, Cowan K. Tackling treatment uncertainties together: the evolution of the James Lind Initiative, 2003-2013. J R Soc Med. 2013;106:482-491.
    • (2013) J R Soc Med , vol.106 , pp. 482-491
    • Chalmers, I.1    Atkinson, P.2    Fenton, M.3    Firkins, L.4    Crowe, S.5    Cowan, K.6
  • 15
    • 77956233532 scopus 로고    scopus 로고
    • The James Lind Alliance: Tackling research mismatches
    • Petit-Zeman S, Firkins L, Scadding JW. The James Lind Alliance: tackling research mismatches. Lancet. 2010;376:667-669.
    • (2010) Lancet , vol.376 , pp. 667-669
    • Petit-Zeman, S.1    Firkins, L.2    Scadding, J.W.3
  • 16
    • 67649649676 scopus 로고    scopus 로고
    • Avoidable waste in the production and reporting of research evidence
    • Chalmers I, Glasziou P. Avoidable waste in the production and reporting of research evidence. Lancet. 2009;374:86-89.
    • (2009) Lancet , vol.374 , pp. 86-89
    • Chalmers, I.1    Glasziou, P.2
  • 17
    • 84903641497 scopus 로고    scopus 로고
    • The next step in the patient revolution: Patients initiating and leading research
    • Vayena E. The next step in the patient revolution: patients initiating and leading research. BMJ. 2014;349:g4318.
    • (2014) BMJ , vol.349
    • Vayena, E.1
  • 18
    • 84859900558 scopus 로고    scopus 로고
    • From patients to partners: Participant-centric initiatives in biomedical research
    • Kaye J, Curren L, Anderson N, et al. From patients to partners: participant-centric initiatives in biomedical research. Nat Rev Genet. 2012;13:371-376.
    • (2012) Nat Rev Genet , vol.13 , pp. 371-376
    • Kaye, J.1    Curren, L.2    Erson, N.3
  • 19
    • 84862001575 scopus 로고    scopus 로고
    • Crowdsourced health research studies: An important emerging complement to clinical trials in the public health research ecosystem
    • Swan M. Crowdsourced health research studies: an important emerging complement to clinical trials in the public health research ecosystem. J Med Internet Res. 2012;14(2):e46.
    • (2012) J Med Internet Res , vol.14 , Issue.2
    • Swan, M.1
  • 20
    • 68249103874 scopus 로고    scopus 로고
    • Comparative effectiveness research: A report from the Institute of Medicine
    • Sox HC, Greenfield S. Comparative effectiveness research: a report from the Institute of Medicine. Ann Intern Med. 2009;151:203-205.
    • (2009) Ann Intern Med , vol.151 , pp. 203-205
    • Sox, H.C.1    Greenfield, S.2
  • 21
    • 85027909017 scopus 로고    scopus 로고
    • Measurement challenges in shared decision making: Putting the ‘patient’ in patient-reported measures
    • Epub, Jun 25
    • Barr PJ, Elwyn G. Measurement challenges in shared decision making: putting the ‘patient’ in patient-reported measures. Health Expect. Epub 2015 Jun 25.
    • (2015) Health Expect
    • Barr, P.J.1    Elwyn, G.2
  • 22
    • 84903308331 scopus 로고    scopus 로고
    • Patient-centeredness in the design of clinical trials
    • Mullins CD, Vandigo J, Zheng Z, Wicks P. Patient-centeredness in the design of clinical trials. Value Health. 2014;17:471-475.
    • (2014) Value Health , vol.17 , pp. 471-475
    • Mullins, C.D.1    Vandigo, J.2    Zheng, Z.3    Wicks, P.4
  • 23
    • 79956191863 scopus 로고    scopus 로고
    • Individuals with diabetes preferred that future trials use patient-important outcomes and provide pragmatic inferences
    • Murad MH, Shah ND, Van Houten HK, et al. Individuals with diabetes preferred that future trials use patient-important outcomes and provide pragmatic inferences. J Clin Epidemiol. 2011;64:743-748.
    • (2011) J Clin Epidemiol , vol.64 , pp. 743-748
    • Murad, M.H.1    Shah, N.D.2    Van Houten, H.K.3
  • 24
    • 84880909003 scopus 로고    scopus 로고
    • Toward patient-centered drug development in oncology
    • Basch E. Toward patient-centered drug development in oncology. N Engl J Med. 2013;369:397-400.
    • (2013) N Engl J Med , vol.369 , pp. 397-400
    • Basch, E.1
  • 25
    • 34547600794 scopus 로고    scopus 로고
    • Assessment of the benefits of user involvement in health research from the Warwick Diabetes Care Research User Group: A qualitative case study
    • Lindenmeyer A, Hearnshaw H, Sturt J, Ormerod R, Aitchison G. Assessment of the benefits of user involvement in health research from the Warwick Diabetes Care Research User Group: a qualitative case study. Health Expect. 2007;10:268-277.
    • (2007) Health Expect , vol.10 , pp. 268-277
    • Lindenmeyer, A.1    Hearnshaw, H.2    Sturt, J.3    Ormerod, R.4    Aitchison, G.5
  • 26
    • 33645082704 scopus 로고    scopus 로고
    • What patients want: Consumer involvement in the design of a randomized controlled trial of routine oxygen supplementation after acute stroke
    • Ali K, Roffe C, Crome P. What patients want: consumer involvement in the design of a randomized controlled trial of routine oxygen supplementation after acute stroke. Stroke. 2006;37:865-871.
    • (2006) Stroke , vol.37 , pp. 865-871
    • Ali, K.1    Roffe, C.2    Crome, P.3
  • 27
    • 84878391110 scopus 로고    scopus 로고
    • Involving patient research partners has a significant impact on outcomes research: A responsive evaluation of the international OMERACT conferences
    • de Wit M, Abma T, Koelewijn-van Loon M, Collins S, Kirwan J. Involving patient research partners has a significant impact on outcomes research: a responsive evaluation of the international OMERACT conferences. BMJ Open. 2013;3(5):e002241.
    • (2013) BMJ Open , vol.3 , Issue.5
    • De Wit, M.1    Abma, T.2    Koelewijn-Van Loon, M.3    Collins, S.4    Kirwan, J.5
  • 29
    • 85027940175 scopus 로고    scopus 로고
    • Use of patient-reported outcomes in randomized, double-blind, placebo-controlled clinical trials
    • Dinan MA, Compton KL, Dhillon JK, et al. Use of patient-reported outcomes in randomized, double-blind, placebo-controlled clinical trials. Med Care. 2011;49:415-419.
    • (2011) Med Care , vol.49 , pp. 415-419
    • Dinan, M.A.1    Compton, K.L.2    Dhillon, J.K.3
  • 30
    • 44649107013 scopus 로고    scopus 로고
    • Patient-important outcomes in registered diabetes trials
    • Gandhi GY, Murad MH, Fujiyoshi A, et al. Patient-important outcomes in registered diabetes trials. JAMA. 2008;299:2543-2549.
    • (2008) JAMA , vol.299 , pp. 2543-2549
    • Gandhi, G.Y.1    Murad, M.H.2    Fujiyoshi, A.3
  • 31
    • 78349261942 scopus 로고    scopus 로고
    • Outcome selection and role of patient reported outcomes in contemporary cardiovascular trials: Systematic review
    • Rahimi K, Malhotra A, Banning AP, Jenkinson C. Outcome selection and role of patient reported outcomes in contemporary cardiovascular trials: systematic review. BMJ. 2010;341:c5707.
    • (2010) BMJ , vol.341
    • Rahimi, K.1    Malhotra, A.2    Banning, A.P.3    Jenkinson, C.4
  • 33
    • 9944234591 scopus 로고    scopus 로고
    • Measuring treatment impact: A review of patient-reported outcomes and other efficacy endpoints in approved product labels
    • Willke RJ, Burke LB, Erickson P. Measuring treatment impact: a review of patient-reported outcomes and other efficacy endpoints in approved product labels. Control Clin Trials. 2004;25:535-552.
    • (2004) Control Clin Trials , vol.25 , pp. 535-552
    • Willke, R.J.1    Burke, L.B.2    Erickson, P.3
  • 34
    • 80054980523 scopus 로고    scopus 로고
    • The patient-reported outcome (PRO) consortium: Filling measurement gaps for PRO end points to support labeling claims
    • Coons SJ, Kothari S, Monz BU, Burke LB. The patient-reported outcome (PRO) consortium: filling measurement gaps for PRO end points to support labeling claims. Clin Pharmacol Ther. 2011;90:743-748.
    • (2011) Clin Pharmacol Ther , vol.90 , pp. 743-748
    • Coons, S.J.1    Kothari, S.2    Monz, B.U.3    Burke, L.B.4
  • 35
    • 61849126937 scopus 로고    scopus 로고
    • Patient reported outcome measures in trials
    • Garratt A. Patient reported outcome measures in trials. BMJ. 2009;338:a2597.
    • (2009) BMJ , vol.338
    • Garratt, A.1
  • 36
    • 80053005298 scopus 로고    scopus 로고
    • A systematic review of patient-reported and economic outcomes: Value to stakeholders in the decision-making process in patients with type 2 diabetes mellitus
    • Vieta A, Badia X, Sacristan JA. A systematic review of patient-reported and economic outcomes: value to stakeholders in the decision-making process in patients with type 2 diabetes mellitus. Clin Ther. 2011;33:1225-1245.
    • (2011) Clin Ther , vol.33 , pp. 1225-1245
    • Vieta, A.1    Badia, X.2    Sacristan, J.A.3
  • 37
    • 84866744389 scopus 로고    scopus 로고
    • Which nontraditional outcomes should be measured in healthcare decision-making in schizophrenia? A systematic review
    • Vieta A, Badia X, Álvarez E, Sacristán JA. Which nontraditional outcomes should be measured in healthcare decision-making in schizophrenia? A systematic review. Perspect Psychiatr Care. 2012;48:198-207.
    • (2012) Perspect Psychiatr Care , vol.48 , pp. 198-207
    • Vieta, A.1    Badia, X.2    Álvarez, E.3    Sacristán, J.A.4
  • 38
    • 84860752079 scopus 로고    scopus 로고
    • Patient-reported outcomes in child and adolescent mental health services (CAMHS): Use of idiographic and standardized measures
    • Wolpert M, Ford T, Trustam E, et al. Patient-reported outcomes in child and adolescent mental health services (CAMHS): use of idiographic and standardized measures. J Ment Health. 2012;21:165-173.
    • (2012) J Ment Health , vol.21 , pp. 165-173
    • Wolpert, M.1    Ford, T.2    Trustam, E.3
  • 39
    • 84876125992 scopus 로고    scopus 로고
    • How do we know whether medical apps work?
    • McCartney M. How do we know whether medical apps work? BMJ. 2013;346:f1811.
    • (2013) BMJ , vol.346
    • McCartney, M.1
  • 40
    • 84886886610 scopus 로고    scopus 로고
    • Regulating medical apps: Which ones and how much?
    • Kamerow D. Regulating medical apps: which ones and how much? BMJ. 2013;347:f6009.
    • (2013) BMJ , vol.347
    • Kamerow, D.1
  • 41
    • 17444372789 scopus 로고    scopus 로고
    • Scientific research is a moral duty
    • Harris J. Scientific research is a moral duty. J Med Ethics. 2005;31:242-248.
    • (2005) J Med Ethics , vol.31 , pp. 242-248
    • Harris, J.1
  • 43
    • 0037007681 scopus 로고    scopus 로고
    • HIV Cost and Services Utilization Study Consortium. Participation in research and access to experimental treatments by HIV-infected patients
    • Gifford AL, Cunningham WE, Heslin KC, et al; HIV Cost and Services Utilization Study Consortium. Participation in research and access to experimental treatments by HIV-infected patients. N Engl J Med. 2002;346:1373-1382.
    • (2002) N Engl J Med , vol.346 , pp. 1373-1382
    • Gifford, A.L.1    Cunningham, W.E.2    Heslin, K.C.3
  • 44
    • 84875411347 scopus 로고    scopus 로고
    • Patient income level and cancer clinical trial participation
    • Unger JM, Hershman DL, Albain KS, et al. Patient income level and cancer clinical trial participation. J Clin Oncol. 2013;31:536-542.
    • (2013) J Clin Oncol , vol.31 , pp. 536-542
    • Unger, J.M.1    Hershman, D.L.2    Albain, K.S.3
  • 45
    • 84860430581 scopus 로고    scopus 로고
    • Looking beyond translation-integrating clinical research with medical practice
    • Gelijns AC, Gabriel SE. Looking beyond translation-integrating clinical research with medical practice. N Engl J Med. 2012;366:1659-1661.
    • (2012) N Engl J Med , vol.366 , pp. 1659-1661
    • Gelijns, A.C.1    Gabriel, S.E.2
  • 46
    • 84923860112 scopus 로고    scopus 로고
    • Clinical research and medical care: Towards effective and complete integration
    • Sacristan JA. Clinical research and medical care: towards effective and complete integration. BMC Med Res Methodol. 2015;15:4.
    • (2015) BMC Med Res Methodol , vol.15 , pp. 4
    • Sacristan, J.A.1
  • 47
    • 0031726036 scopus 로고    scopus 로고
    • Randomized database studies: A new method to assess drugs’ effectiveness?
    • Sacristán JA, Soto J, Galende I, Hylan TR. Randomized database studies: a new method to assess drugs’ effectiveness? J Clin Epidemiol. 1998;51:713-715.
    • (1998) J Clin Epidemiol , vol.51 , pp. 713-715
    • Sacristán, J.A.1    Soto, J.2    Galende, I.3    Hylan, T.R.4
  • 48
    • 84886246781 scopus 로고    scopus 로고
    • The randomized registry trial-the next disruptive technology in clinical research?
    • Lauer MS, D’Agostino RB Sr. The randomized registry trial-the next disruptive technology in clinical research? N Engl J Med. 2013;369:1579-1581.
    • (2013) N Engl J Med , vol.369 , pp. 1579-1581
    • Lauer, M.S.1    D’Agostino, R.B.2
  • 49
    • 84959494943 scopus 로고    scopus 로고
    • No big data without small data: Learning health care systems begin and end with the individual patient
    • Sacristan JA, Dilla T. No big data without small data: learning health care systems begin and end with the individual patient. J Eval Clin Pract. 2015;21(6):1014-1017.
    • (2015) J Eval Clin Pract , vol.21 , Issue.6 , pp. 1014-1017
    • Sacristan, J.A.1    Dilla, T.2
  • 50
    • 0037456358 scopus 로고    scopus 로고
    • Readability standards for informed-consent forms as compared with actual readability
    • Paasche-Orlow MK, Taylor HA, Brancati FL. Readability standards for informed-consent forms as compared with actual readability. N Engl J Med. 2003;348:721-726.
    • (2003) N Engl J Med , vol.348 , pp. 721-726
    • Paasche-Orlow, M.K.1    Taylor, H.A.2    Brancati, F.L.3
  • 51
    • 84871915836 scopus 로고    scopus 로고
    • An analysis of the readability of patient information and consent forms used in research studies in anaesthesia in Australia and New Zealand
    • Taylor HE, Bramley DE. An analysis of the readability of patient information and consent forms used in research studies in anaesthesia in Australia and New Zealand. Anaesth Intensive Care. 2012;40:995-998.
    • (2012) Anaesth Intensive Care , vol.40 , pp. 995-998
    • Taylor, H.E.1    Bramley, D.E.2
  • 53
    • 84923863238 scopus 로고    scopus 로고
    • Participants’ understanding of informed consent in clinical trials over three decades: Systematic review and meta-analysis
    • Tam NT, Huy NT, Thoa le TB, et al. Participants’ understanding of informed consent in clinical trials over three decades: systematic review and meta-analysis. Bull World Health Organ. 2015;93:186H-198H.
    • (2015) Bull World Health Organ , vol.93 , pp. 186H-198H
    • Tam, N.T.1    Huy, N.T.2    Thoa Le, T.B.3
  • 54
    • 23044490964 scopus 로고    scopus 로고
    • Is it better to consent to an RCT or to care? Muetadeltaepsilonnu alphagammaalphanu (“nothing in excess”)
    • Dreyfuss D. Is it better to consent to an RCT or to care? Muetadeltaepsilonnu alphagammaalphanu (“nothing in excess”). Intensive Care Med. 2005;31:345-355.
    • (2005) Intensive Care Med , vol.31 , pp. 345-355
    • Dreyfuss, D.1
  • 55
    • 84969804651 scopus 로고    scopus 로고
    • Regulation (EU) No 536/2014 of the European Parliament and of the Council of 16 April 2014 on clinical trials on medicinal products for human use, and repealing Directive 2001/20/EC
    • Regulation (EU) No 536/2014 of the European Parliament and of the Council of 16 April 2014 on clinical trials on medicinal products for human use, and repealing Directive 2001/20/EC.
  • 56
    • 36849069884 scopus 로고    scopus 로고
    • Clinical trials and medical care: Defining the therapeutic misconception
    • Henderson GE, Churchill LR, Davis AM, et al. Clinical trials and medical care: defining the therapeutic misconception. PLoS Med. 2007;4:e324.
    • (2007) Plos Med , vol.4
    • Henderson, G.E.1    Churchill, L.R.2    Davis, A.M.3
  • 58
    • 55049135606 scopus 로고    scopus 로고
    • Outcomes of patients who participate in randomized controlled trials compared to similar patients receiving similar interventions who do not participate
    • Vist GE, Bryant D, Somerville L, Birminghem T, Oxman AD. Outcomes of patients who participate in randomized controlled trials compared to similar patients receiving similar interventions who do not participate. Cochrane Database Syst Rev. 2008;(3):MR000009.
    • (2008) Cochrane Database Syst Rev , Issue.3
    • Vist, G.E.1    Bryant, D.2    Somerville, L.3    Birminghem, T.4    Oxman, A.D.5
  • 59
    • 0037167309 scopus 로고    scopus 로고
    • Thrombolysis for acute ischaemic stroke: Consumer involvement in design of new randomised controlled trial
    • Koops L, Lindley RI. Thrombolysis for acute ischaemic stroke: consumer involvement in design of new randomised controlled trial. BMJ. 2002;325:415.
    • (2002) BMJ , vol.325 , pp. 415
    • Koops, L.1    Lindley, R.I.2
  • 60
    • 84857922865 scopus 로고    scopus 로고
    • Perfil de los miembros no sanitarios de los comités éticos de investigación clínica y comités de ética asistencial de Cataluña
    • Spanish
    • Villen N, Redondo S, Font R, Quintana S. Perfil de los miembros no sanitarios de los comités éticos de investigación clínica y comités de ética asistencial de Cataluña [Profile of lay members of ethics committees in Catalonia (Spain)]. Med Clin. 2012;138:296-299. Spanish.
    • (2012) Med Clin , vol.138 , pp. 296-299
    • Villen, N.1    Redondo, S.2    Font, R.3    Quintana, S.4
  • 61
    • 84899862013 scopus 로고    scopus 로고
    • Informed consent in randomized quality improvement trials: A critical barrier for learning health systems
    • Pletcher MJ, Lo B, Grady D. Informed consent in randomized quality improvement trials: a critical barrier for learning health systems. JAMA Intern Med. 2014;174:668-670.
    • (2014) JAMA Intern Med , vol.174 , pp. 668-670
    • Pletcher, M.J.1    Lo, B.2    Grady, D.3
  • 63
    • 84940247675 scopus 로고    scopus 로고
    • Decision aids for randomised controlled trials: A qualitative exploration of stakeholders’ views
    • Gillies K, Skea ZC, Campbell MK. Decision aids for randomised controlled trials: a qualitative exploration of stakeholders’ views. BMJ Open. 2014;4:e005734.
    • (2014) BMJ Open , vol.4
    • Gillies, K.1    Skea, Z.C.2    Campbell, M.K.3
  • 64
    • 79957494973 scopus 로고    scopus 로고
    • Involving patients with depression in research: Survey of patients’ attitudes to participation
    • Tallon D, Mulligan J, Wiles N, et al. Involving patients with depression in research: survey of patients’ attitudes to participation. Br J Gen Pract. 2011;61:134-141.
    • (2011) Br J Gen Pract , vol.61 , pp. 134-141
    • Tallon, D.1    Mulligan, J.2    Wiles, N.3
  • 65
    • 84855194338 scopus 로고    scopus 로고
    • Research Participant Perception Survey Focus Group Subcommittee. Assessing research participants’ perceptions of their clinical research experiences
    • Kost RG, Lee LM, Yessis J, Coller BS, Henderson DK; Research Participant Perception Survey Focus Group Subcommittee. Assessing research participants’ perceptions of their clinical research experiences. Clin Trans Sci. 2011;4:403-413.
    • (2011) Clin Trans Sci , vol.4 , pp. 403-413
    • Kost, R.G.1    Lee, L.M.2    Yessis, J.3    Coller, B.S.4    Henderson, D.K.5
  • 67
    • 46449128132 scopus 로고    scopus 로고
    • Why patients continue to participate in clinical research
    • ESPRIT Group
    • Wendler D, Krohmal B, Emanuel EJ, Grady C; ESPRIT Group. Why patients continue to participate in clinical research. Arch Intern Med. 2008;168:1294-1299.
    • (2008) Arch Intern Med , vol.168 , pp. 1294-1299
    • Wendler, D.1    Krohmal, B.2    Emanuel, E.J.3    Grady, C.4
  • 68
    • 84897524110 scopus 로고    scopus 로고
    • Clinical trial participants’ experiences of completing questionnaires: A qualitative study
    • Holmberg C, Karner JJ, Rappenecker J, Witt CM. Clinical trial participants’ experiences of completing questionnaires: a qualitative study. BMJ Open. 2014;4:e004363.
    • (2014) BMJ Open , vol.4
    • Holmberg, C.1    Karner, J.J.2    Rappenecker, J.3    Witt, C.M.4
  • 70
    • 34548683001 scopus 로고    scopus 로고
    • Attitudes of research ethics board chairs towards disclosure of research results to participants: Results of a national survey
    • MacNeil SD, Fernandez CV. Attitudes of research ethics board chairs towards disclosure of research results to participants: results of a national survey. J Med Ethics. 2007;33:549-553.
    • (2007) J Med Ethics , vol.33 , pp. 549-553
    • Macneil, S.D.1    Fernandez, C.V.2
  • 71
    • 0037125416 scopus 로고    scopus 로고
    • Informing clinical trial participants about study results
    • Partridge AH, Winer EP. Informing clinical trial participants about study results. JAMA. 2002;288:363-365.
    • (2002) JAMA , vol.288 , pp. 363-365
    • Partridge, A.H.1    Winer, E.P.2
  • 72
    • 34247544395 scopus 로고    scopus 로고
    • Información de los resultados a los participantes de los ensayos clínicos
    • Spanish
    • Dal-Re R, Costa J. Información de los resultados a los participantes de los ensayos clínicos [Informing clinical trials participants about the results]. Med Clin. 2007;128:375-378. Spanish.
    • (2007) Med Clin , vol.128 , pp. 375-378
    • Dal-Re, R.1    Costa, J.2
  • 73
    • 23344451021 scopus 로고    scopus 로고
    • Disclosing individual results of clinical research: Implications of respect for participants
    • Shalowitz DI, Miller FG. Disclosing individual results of clinical research: implications of respect for participants. JAMA. 2005;294:737-740.
    • (2005) JAMA , vol.294 , pp. 737-740
    • Shalowitz, D.I.1    Miller, F.G.2
  • 74
    • 84888610885 scopus 로고    scopus 로고
    • World Medical Association Declaration of Helsinki: Ethical principles for medical research involving human subjects
    • World Medical Association. World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects. JAMA. 2013;310:2191-2194.
    • (2013) JAMA , vol.310 , pp. 2191-2194
  • 75
    • 77955332772 scopus 로고    scopus 로고
    • Communicating the results of research: How do participants of a cardiac rehabilitation RCT prefer to be informed?
    • Dalal H, Wingham J, Pritchard C, et al. Communicating the results of research: how do participants of a cardiac rehabilitation RCT prefer to be informed? Health Expect. 2010;13:323-330.
    • (2010) Health Expect , vol.13 , pp. 323-330
    • Dalal, H.1    Wingham, J.2    Pritchard, C.3
  • 76
    • 42449094635 scopus 로고    scopus 로고
    • Initial experience with a group presentation of study results to research participants
    • Avins AL, Bent S, Padula A, Staccone S, Badua E, Goldberg H. Initial experience with a group presentation of study results to research participants. Trials. 2008;9:16.
    • (2008) Trials , vol.9 , pp. 16
    • Avins, A.L.1    Bent, S.2    Padula, A.3    Staccone, S.4    Badua, E.5    Goldberg, H.6
  • 77
    • 61449158785 scopus 로고    scopus 로고
    • Huntington Study Group TREND-HD Investigators. Communicating clinical trial results to research participants
    • Dorsey ER, Beck CA, Adams M, et al; Huntington Study Group TREND-HD Investigators. Communicating clinical trial results to research participants. Arch Neurol. 2008;65:1590-1595.
    • (2008) Arch Neurol , vol.65 , pp. 1590-1595
    • Dorsey, E.R.1    Beck, C.A.2    Adams, M.3
  • 80
    • 84897554437 scopus 로고    scopus 로고
    • Collecting data on patient experience is not enough: They must be used to improve care
    • Coulter A, Locock L, Ziebland S, Calabrese J. Collecting data on patient experience is not enough: they must be used to improve care. BMJ. 2014;348:g2225.
    • (2014) BMJ , vol.348
    • Coulter, A.1    Locock, L.2    Ziebland, S.3    Calabrese, J.4
  • 81
    • 84907010995 scopus 로고    scopus 로고
    • Testing on detection of high-risk prostate cancers by incorporating patient preferences into decision making
    • Thompson IM Jr, Leach RJ, Ankerst DP. Focusing PSA testing on detection of high-risk prostate cancers by incorporating patient preferences into decision making. JAMA. 2014;312:995-996.
    • (2014) JAMA , vol.312 , pp. 995-996
    • Thompson, I.M.1    Leach, R.J.2    Ankerst, D.P.3    Focusing, P.4
  • 82
    • 84923273515 scopus 로고    scopus 로고
    • Sharing of clinical trial data: Benefits, risks, and uniform principles
    • Rosenblatt M, Jain SH, Cahill M. Sharing of clinical trial data: benefits, risks, and uniform principles. Ann Intern Med. 2015;162:306-307.
    • (2015) Ann Intern Med , vol.162 , pp. 306-307
    • Rosenblatt, M.1    Jain, S.H.2    Cahill, M.3
  • 83
    • 84875681788 scopus 로고    scopus 로고
    • Ushering in a new era of open science through data sharing: The wall must come down
    • Ross JS, Krumholz HM. Ushering in a new era of open science through data sharing: the wall must come down. JAMA. 2013;309:1355-1356.
    • (2013) JAMA , vol.309 , pp. 1355-1356
    • Ross, J.S.1    Krumholz, H.M.2
  • 84
    • 84923279613 scopus 로고    scopus 로고
    • Clinical trial data sharing: What do we do now?
    • Goodman SN. Clinical trial data sharing: what do we do now? Ann Intern Med. 2015;162:308-309.
    • (2015) Ann Intern Med , vol.162 , pp. 308-309
    • Goodman, S.N.1
  • 85
    • 84923268294 scopus 로고    scopus 로고
    • Sharing clinical trial data: Maximizing benefits, minimizing risk
    • Lo B. Sharing clinical trial data: maximizing benefits, minimizing risk. JAMA. 2015;313:793-794.
    • (2015) JAMA , vol.313 , pp. 793-794
    • Lo, B.1
  • 86
    • 84920053885 scopus 로고    scopus 로고
    • Transparency and the European Medicines Agency-sharing of clinical trial data
    • Bonini S, Eichler HG, Wathion N, Rasi G. Transparency and the European Medicines Agency-sharing of clinical trial data. N Engl J Med. 2014;371:2452-2455.
    • (2014) N Engl J Med , vol.371 , pp. 2452-2455
    • Bonini, S.1    Eichler, H.G.2    Wathion, N.3    Rasi, G.4
  • 87
    • 80051560596 scopus 로고    scopus 로고
    • Patient-expert partnerships in research: How to stimulate inclusion of patient perspectives
    • Elberse JE, Caron-Flinterman JF, Broerse JE. Patient-expert partnerships in research: how to stimulate inclusion of patient perspectives. Health Expect. 2011;14:225-239.
    • (2011) Health Expect , vol.14 , pp. 225-239
    • Elberse, J.E.1    Caron-Flinterman, J.F.2    Broerse, J.E.3
  • 88
    • 84907537420 scopus 로고    scopus 로고
    • The expert patient: Towards a novel definition
    • Cordier JF. The expert patient: towards a novel definition. Eur Respir J. 2014;44:853-857.
    • (2014) Eur Respir J , vol.44 , pp. 853-857
    • Cordier, J.F.1
  • 89
    • 84924362164 scopus 로고    scopus 로고
    • Training on trials: Patients taught the language of drug development
    • Chakradhar S. Training on trials: patients taught the language of drug development. Nat Med. 2015;21:209-210.
    • (2015) Nat Med , vol.21 , pp. 209-210
    • Chakradhar, S.1
  • 90
    • 84865988087 scopus 로고    scopus 로고
    • Patient involvement in a scientific advisory process: Setting the research agenda for medical products
    • Elberse JE, Pittens CA, de Cock Buning T, Broerse JE. Patient involvement in a scientific advisory process: setting the research agenda for medical products. Health Policy. 2012;107:231-242.
    • (2012) Health Policy , vol.107 , pp. 231-242
    • Elberse, J.E.1    Pittens, C.A.2    De Cock Buning, T.3    Broerse, J.E.4


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.