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Volumn 17, Issue 1, 2019, Pages

Health researchers' experiences, perceptions and barriers related to sharing study results with participants

Author keywords

dissemination survey; health research dissemination; research communication; Research dissemination; research results; results sharing

Indexed keywords

ADULT; ARTICLE; DATA ANALYSIS; FEMALE; HEALTH LITERACY; HEALTH SCIENCE; HUMAN; HUMAN EXPERIMENT; LEADERSHIP; MALE; MEDICAL RESEARCH; PERCEPTION; PUBLIC HEALTH; QUANTITATIVE ANALYSIS; SCIENTIST; UNITED STATES; ATTITUDE; INFORMATION DISSEMINATION; INTERPERSONAL COMMUNICATION; PERSONNEL; QUESTIONNAIRE; RESEARCH SUBJECT;

EID: 85062406387     PISSN: None     EISSN: 14784505     Source Type: Journal    
DOI: 10.1186/s12961-019-0422-5     Document Type: Article
Times cited : (36)

References (44)
  • 1
    • 31644443407 scopus 로고    scopus 로고
    • Receiving a summary of the results of a trial: Qualitative study of participants' views
    • Dixon-Woods M, Jackson C, Windridge KC, Kenyon S. Receiving a summary of the results of a trial: qualitative study of participants' views. BMJ. 2006;332(7535):206-10.
    • (2006) BMJ , vol.332 , Issue.7535 , pp. 206-210
    • Dixon-Woods, M.1    Jackson, C.2    Windridge, K.C.3    Kenyon, S.4
  • 2
    • 15844375512 scopus 로고    scopus 로고
    • Offering participants results of a clinical trial: Sharing results of a negative study
    • Partridge AH, Wong JS, Knudsen K, Gelman R, Sampson E, Gadd M, et al. Offering participants results of a clinical trial: sharing results of a negative study. Lancet. 2005;365(9463):963-4.
    • (2005) Lancet , vol.365 , Issue.9463 , pp. 963-964
    • Partridge, A.H.1    Wong, J.S.2    Knudsen, K.3    Gelman, R.4    Sampson, E.5    Gadd, M.6
  • 3
    • 60849120468 scopus 로고    scopus 로고
    • Providing research results to participants: Attitudes and needs of adolescents and parents of children with cancer
    • Fernandez CV, Gao J, Strahlendorf C, Moghrabi A, Pentz RD, Barfield RC, et al. Providing research results to participants: attitudes and needs of adolescents and parents of children with cancer. J Clin Oncol. 2009;27(6):878-83.
    • (2009) J Clin Oncol , vol.27 , Issue.6 , pp. 878-883
    • Fernandez, C.V.1    Gao, J.2    Strahlendorf, C.3    Moghrabi, A.4    Pentz, R.D.5    Barfield, R.C.6
  • 4
    • 84875436863 scopus 로고    scopus 로고
    • Dissemination of research findings to research participants living with HIV in rural Uganda: Challenges and rewards
    • Baylor A, Muzoora C, Bwana M, Kembabazi A, Haberer JE, Matthews LT, et al. Dissemination of research findings to research participants living with HIV in rural Uganda: challenges and rewards. PLoS Med. 2013;10(3):4.
    • (2013) PLoS Med , vol.10 , Issue.3 , pp. 4
    • Baylor, A.1    Muzoora, C.2    Bwana, M.3    Kembabazi, A.4    Haberer, J.E.5    Matthews, L.T.6
  • 5
    • 85017599756 scopus 로고    scopus 로고
    • Qualitative study of participants' perceptions and preferences regarding research dissemination
    • Purvis R, Abraham T, Long C, Stewart M, Warmack T, McElfish P. Qualitative study of participants' perceptions and preferences regarding research dissemination. Am J Bioeth. 2017;8(2):69-74.
    • (2017) Am J Bioeth , vol.8 , Issue.2 , pp. 69-74
    • Purvis, R.1    Abraham, T.2    Long, C.3    Stewart, M.4    Warmack, T.5    McElfish, P.6
  • 7
    • 85055657246 scopus 로고    scopus 로고
    • Returning research results: Caregivers' reactions following computerized cognitive training among childhood cancer survivors
    • 30094047
    • Scott S, Ashford J, Clark K, Martin-Elbahesh K, Conklin H. Returning research results: caregivers' reactions following computerized cognitive training among childhood cancer survivors. Neurooncol Pract. 2018;5(3):194-200.
    • (2018) Neurooncol Pract , vol.5 , Issue.3 , pp. 194-200
    • Scott, S.1    Ashford, J.2    Clark, K.3    Martin-Elbahesh, K.4    Conklin, H.5
  • 8
    • 84966420150 scopus 로고    scopus 로고
    • Accessed 29 Nov 2018.
    • Patient-Centered Outcomes Research Institute. What We Mean by Engagement 2015. http://www.pcori.org/funding-opportunities/what-we-mean-engagement. Accessed 29 Nov 2018.
    • (2015) What We Mean by Engagement
  • 11
    • 77956597294 scopus 로고    scopus 로고
    • Dissemination of results in community-based participatory research
    • Chen PG, Diaz N, Lucas G, Rosenthal MS. Dissemination of results in community-based participatory research. Am J Prev Med. 2010;39(4):372-8.
    • (2010) Am J Prev Med , vol.39 , Issue.4 , pp. 372-378
    • Chen, P.G.1    Diaz, N.2    Lucas, G.3    Rosenthal, M.S.4
  • 12
    • 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(3):363-5.
    • (2002) JAMA , vol.288 , Issue.3 , pp. 363-365
    • Partridge, A.H.1    Winer, E.P.2
  • 13
    • 0042735076 scopus 로고    scopus 로고
    • Offering to return results to research participants: Attitudes and needs of principal investigators in the Children's Oncology Group
    • Fernandez C, Kodish E, Shurin S, Weijer C. Offering to return results to research participants: attitudes and needs of principal investigators in the Children's Oncology Group. J Pediatr Hematol Oncol. 2003;25(9):704-8.
    • (2003) J Pediatr Hematol Oncol , vol.25 , Issue.9 , pp. 704-708
    • Fernandez, C.1    Kodish, E.2    Shurin, S.3    Weijer, C.4
  • 14
    • 2342453359 scopus 로고    scopus 로고
    • Oncology physician and nurse practices and attitudes regarding offering clinical trial results to study participants
    • Partridge AH, Hackett N, Blood E, Gelman R, Joffe S, Bauer-Wu S, et al. Oncology physician and nurse practices and attitudes regarding offering clinical trial results to study participants. J Natl Cancer Inst. 2004;96(8):629-32.
    • (2004) J Natl Cancer Inst , vol.96 , Issue.8 , pp. 629-632
    • Partridge, A.H.1    Hackett, N.2    Blood, E.3    Gelman, R.4    Joffe, S.5    Bauer-Wu, S.6
  • 15
    • 23744513284 scopus 로고    scopus 로고
    • Providing research results to study participants: Support versus practice of researchers presenting at the American Society of Hematology annual meeting
    • 1:CAS:528:DC%2BD2MXosVejsb8%3D
    • Rigby H, Fernandez CV. Providing research results to study participants: support versus practice of researchers presenting at the American Society of Hematology annual meeting. Blood. 2005;106(4):1199-202.
    • (2005) Blood , vol.106 , Issue.4 , pp. 1199-1202
    • Rigby, H.1    Fernandez, C.V.2
  • 16
    • 77955114542 scopus 로고    scopus 로고
    • Does dissemination extend beyond publication: A survey of a cross section of public funded research in the UK
    • Wilson PM, Petticrew M, Calnan MW, Nazareth I. Does dissemination extend beyond publication: a survey of a cross section of public funded research in the UK. Implement Sci. 2010;5:61.
    • (2010) Implement Sci , vol.5 , pp. 61
    • Wilson, P.M.1    Petticrew, M.2    Calnan, M.W.3    Nazareth, I.4
  • 17
    • 40649092107 scopus 로고    scopus 로고
    • Duty to disclose what? Querying the putative obligation to return research results to participants
    • 1:STN:280:DC%2BD1c7lsl2mug%3D%3D
    • Miller FA, Christensen R, Giacomini M, Robert JS. Duty to disclose what? Querying the putative obligation to return research results to participants. J Med Ethics. 2008;34(3):210-3.
    • (2008) J Med Ethics , vol.34 , Issue.3 , pp. 210-213
    • Miller, F.A.1    Christensen, R.2    Giacomini, M.3    Robert, J.S.4
  • 18
    • 34250621200 scopus 로고    scopus 로고
    • The National Health and Medical Research Council the Australian Research Council and Universities Australia Commonwealth of Australia Canberra (Updated 2018)
    • The National Health and Medical Research Council the Australian Research Council and Universities Australia. National Statement on Ethical Conduct in Human Research 2007 (Updated 2018). Canberra: Commonwealth of Australia; 2007. (Updated 2018)
    • (2007) National Statement on Ethical Conduct in Human Research 2007 (Updated 2018)
  • 20
    • 85062521430 scopus 로고    scopus 로고
    • Accessed 29 Nov 2018.
    • NHS Health Research Authority. Publication and Dissemination of Research Findings. https://www.hra.nhs.uk/planning-and-improving-research/best-practice/publication-and-dissemination-research-findings/. Accessed 29 Nov 2018.
    • Publication and Dissemination of Research Findings
  • 25
    • 72149086180 scopus 로고    scopus 로고
    • Toward a definitions of mixed methods research
    • Johnson R, Onweugbuzie A, Turner L. Toward a definitions of mixed methods research. J Mixed Methods Res. 2007;1(2):112-33.
    • (2007) J Mixed Methods Res , vol.1 , Issue.2 , pp. 112-133
    • Johnson, R.1    Onweugbuzie, A.2    Turner, L.3
  • 26
    • 84993820511 scopus 로고    scopus 로고
    • Mixed methods research: A research paradigm whose time has come
    • Johnson R, Onwuegbuzie A. Mixed methods research: a research paradigm whose time has come. Educ Res. 2004;33(7):14-26.
    • (2004) Educ Res , vol.33 , Issue.7 , pp. 14-26
    • Johnson, R.1    Onwuegbuzie, A.2
  • 27
    • 0036115519 scopus 로고    scopus 로고
    • Revisiting the quantitative-qualitative debate: Implications for mixed-methods research
    • Sale JE, Lohfeld LH, Brazil K. Revisiting the quantitative-qualitative debate: implications for mixed-methods research. Qual Quant. 2002;36(1):43-53.
    • (2002) Qual Quant , vol.36 , Issue.1 , pp. 43-53
    • Sale, J.E.1    Lohfeld, L.H.2    Brazil, K.3
  • 28
    • 37349091470 scopus 로고    scopus 로고
    • Accessed 29 Nov 2018.
    • National Institutes of Health National Center for Advancing Translational Sciences. Clinical and Translational Science Award (CTSA). https://ncats.nih.gov/ctsa/about. Accessed 29 Nov 2018.
    • Clinical and Translational Science Award (CTSA)
  • 29
    • 85049006906 scopus 로고    scopus 로고
    • Researchers' experiences with and perceptions of returning results to participants: Study protocol
    • McElfish PA, Purvis RS, Long CR. Researchers' experiences with and perceptions of returning results to participants: study protocol. Contemp Clin Trials Commun. 2018;11:95-8.
    • (2018) Contemp Clin Trials Commun , vol.11 , pp. 95-98
    • McElfish, P.A.1    Purvis, R.S.2    Long, C.R.3
  • 30
    • 78650709222 scopus 로고    scopus 로고
    • Accessed 29 Nov 2018.
    • Centers for Disease Control and Prevention. Prevention Research Centers. https://www.cdc.gov/prc/index.htm. Accessed 29 Nov 2018.
    • Prevention Research Centers
  • 31
    • 62049084378 scopus 로고    scopus 로고
    • Research electronic data capture (REDCap) - A metadata-driven methodology and workflow process for providing translational research informatics support
    • Harris P, Taylor R, Thielke R, Payne J, Gonzalez N, Conde J. Research electronic data capture (REDCap) - a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Infrom. 2009;42(2):377-81.
    • (2009) J Biomed Infrom , vol.42 , Issue.2 , pp. 377-381
    • Harris, P.1    Taylor, R.2    Thielke, R.3    Payne, J.4    Gonzalez, N.5    Conde, J.6
  • 34
    • 0142029074 scopus 로고    scopus 로고
    • Classifying the findings in qualitative studies
    • Sandelowski M, Barroso J. Classifying the findings in qualitative studies. Qual Health Res. 2003;13(7):905-23.
    • (2003) Qual Health Res , vol.13 , Issue.7 , pp. 905-923
    • Sandelowski, M.1    Barroso, J.2
  • 37
    • 84887284521 scopus 로고    scopus 로고
    • Ethical community-engaged research: A literature review
    • Mikesell L, Bromley E, Khodyakov D. Ethical community-engaged research: a literature review. Am J Public Health. 2013;103(12):e7-e14.
    • (2013) Am J Public Health , vol.103 , Issue.12 , pp. e7-e14
    • Mikesell, L.1    Bromley, E.2    Khodyakov, D.3
  • 38
    • 84954454330 scopus 로고    scopus 로고
    • We're checking them out": Indigenous and non-Indigenous research participants' accounts of deciding to be involved in research
    • Guillemin M, Gillam L, Barnard E, Stewart P, Walker H, Rosenthal D. "We're checking them out": Indigenous and non-Indigenous research participants' accounts of deciding to be involved in research. Int J Equity Health. 2016;15:8.
    • (2016) Int J Equity Health , vol.15 , pp. 8
    • Guillemin, M.1    Gillam, L.2    Barnard, E.3    Stewart, P.4    Walker, H.5    Rosenthal, D.6
  • 39
    • 84973382093 scopus 로고    scopus 로고
    • A review of approaches to improve participation of culturally and linguistically diverse populations in clinical trials
    • Hughson JA, Woodward-Kron R, Parker A, Hajek J, Bresin A, Knoch U, et al. A review of approaches to improve participation of culturally and linguistically diverse populations in clinical trials. Trials. 2016;17:263.
    • (2016) Trials , vol.17 , pp. 263
    • Hughson, J.A.1    Woodward-Kron, R.2    Parker, A.3    Hajek, J.4    Bresin, A.5    Knoch, U.6
  • 40
    • 85028717632 scopus 로고    scopus 로고
    • African Americans and clinical research: Evidence concerning barriers and facilitators to participation and recruitment recommendations
    • Hughes TB, Varma VR, Pettigrew C, Albert MS. African Americans and clinical research: evidence concerning barriers and facilitators to participation and recruitment recommendations. Gerontologist. 2017;57(2):348-58.
    • (2017) Gerontologist , vol.57 , Issue.2 , pp. 348-358
    • Hughes, T.B.1    Varma, V.R.2    Pettigrew, C.3    Albert, M.S.4
  • 41
    • 84893379206 scopus 로고    scopus 로고
    • A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders
    • George S, Duran N, Norris K. A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders. Am J Public Health. 2014;104(2):e16-31.
    • (2014) Am J Public Health , vol.104 , Issue.2 , pp. e16-e31
    • George, S.1    Duran, N.2    Norris, K.3
  • 42
    • 84926652145 scopus 로고    scopus 로고
    • An implementation framework for the feedback of individual research results and incidental findings in research
    • Thorogood A, Joly Y, Knoppers BM, Nilsson T, Metrakos P, Lazaris A, et al. An implementation framework for the feedback of individual research results and incidental findings in research. BMC Med Ethics. 2014;15:88.
    • (2014) BMC Med Ethics , vol.15 , pp. 88
    • Thorogood, A.1    Joly, Y.2    Knoppers, B.M.3    Nilsson, T.4    Metrakos, P.5    Lazaris, A.6
  • 44
    • 84881505065 scopus 로고    scopus 로고
    • Designing for dissemination among public health researchers: Findings from a national survey in the United States
    • Brownson R, Jacobs J, Tabak R, Hoehner C, Stamatakis K. Designing for dissemination among public health researchers: findings from a national survey in the United States. Am J Public Health. 2013;103(9):1693-9.
    • (2013) Am J Public Health , vol.103 , Issue.9 , pp. 1693-1699
    • Brownson, R.1    Jacobs, J.2    Tabak, R.3    Hoehner, C.4    Stamatakis, K.5


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.