Barriers and facilitators to qualitative data sharing in the United States: A survey of qualitative researchers

被引:22
作者
Mozersky, Jessica [1 ]
McIntosh, Tristan [1 ]
Walsh, Heidi A. [1 ]
Parsons, Meredith, V [1 ]
Goodman, Melody [2 ]
DuBois, James M. [1 ]
机构
[1] Washington Univ, Sch Med, Div Gen Med Sci, Bioeth Res Ctr, St Louis, MO 63110 USA
[2] NYU, Sch Global Publ Hlth, New York, NY USA
关键词
HEALTH RESEARCH; ETHICAL-ISSUES;
D O I
10.1371/journal.pone.0261719
中图分类号
O [数理科学和化学]; P [天文学、地球科学]; Q [生物科学]; N [自然科学总论];
学科分类号
07 ; 0710 ; 09 ;
摘要
Qualitative health data are rarely shared in the United States (U.S.). This is unfortunate because gathering qualitative data is labor and time-intensive, and data sharing enables secondary research, training, and transparency. A new U.S. federal policy mandates data sharing by 2023, and is agnostic to data type. We surveyed U.S. qualitative researchers (N = 425) on the barriers and facilitators of sharing qualitative health or sensitive research data. Most researchers (96%) have never shared qualitative data in a repository. Primary concerns were lack of participant permission to share data, data sensitivity, and breaching trust. Researcher willingness to share would increase if participants agreed and if sharing increased the societal impact of their research. Key resources to increase willingness to share were funding, guidance, and de-identification assistance. Public health and biomedical researchers were most willing to share. Qualitative researchers need to prepare for this new reality as sharing qualitative data requires unique considerations.
引用
收藏
页数:13
相关论文
共 35 条
[1]   Estimating the reproducibility of psychological science [J].
Aarts, Alexander A. ;
Anderson, Joanna E. ;
Anderson, Christopher J. ;
Attridge, Peter R. ;
Attwood, Angela ;
Axt, Jordan ;
Babel, Molly ;
Bahnik, Stepan ;
Baranski, Erica ;
Barnett-Cowan, Michael ;
Bartmess, Elizabeth ;
Beer, Jennifer ;
Bell, Raoul ;
Bentley, Heather ;
Beyan, Leah ;
Binion, Grace ;
Borsboom, Denny ;
Bosch, Annick ;
Bosco, Frank A. ;
Bowman, Sara D. ;
Brandt, Mark J. ;
Braswell, Erin ;
Brohmer, Hilmar ;
Brown, Benjamin T. ;
Brown, Kristina ;
Bruening, Jovita ;
Calhoun-Sauls, Ann ;
Callahan, Shannon P. ;
Chagnon, Elizabeth ;
Chandler, Jesse ;
Chartier, Christopher R. ;
Cheung, Felix ;
Christopherson, Cody D. ;
Cillessen, Linda ;
Clay, Russ ;
Cleary, Hayley ;
Cloud, Mark D. ;
Cohn, Michael ;
Cohoon, Johanna ;
Columbus, Simon ;
Cordes, Andreas ;
Costantini, Giulio ;
Alvarez, Leslie D. Cramblet ;
Cremata, Ed ;
Crusius, Jan ;
DeCoster, Jamie ;
DeGaetano, Michelle A. ;
Della Penna, Nicolas ;
den Bezemer, Bobby ;
Deserno, Marie K. .
SCIENCE, 2015, 349 (6251)
[2]  
Barbour RS, 2000, J EVAL CLIN PRACT, V6, P155
[3]   Revisiting Qualitative Data Reuse: A Decade On [J].
Bishop, Libby ;
Kuula-Lummi, Arja .
SAGE OPEN, 2017, 7 (01)
[4]   Qualitative Researchers' Understandings of Their Practice and the Implications for Data Archiving and Sharing [J].
Broom, Alex ;
Cheshire, Lynda ;
Emmison, Michael .
SOCIOLOGY-THE JOURNAL OF THE BRITISH SOCIOLOGICAL ASSOCIATION, 2009, 43 (06) :1163-1180
[5]  
Brownson RC., 2012, DISSEMINATION IMPLEM, V23
[6]   THE MEANING OF MEDICATIONS - ANOTHER LOOK AT COMPLIANCE [J].
CONRAD, P .
SOCIAL SCIENCE & MEDICINE, 1985, 20 (01) :29-37
[7]  
Corti L., 2016, SAGE OPEN, V6, DOI [10.1177/2158244016679211, DOI 10.1177/2158244016679211]
[8]  
Corti L., 2014, MANAGING SHARING RES, V2014
[9]  
Corti L., 2004, Qualitative Research Practice, P297, DOI DOI 10.4135/9781848608191
[10]   Learning to manage and share data: jump-starting the research methods curriculum [J].
Corti, Louise ;
Van den Eynden, Veerle .
INTERNATIONAL JOURNAL OF SOCIAL RESEARCH METHODOLOGY, 2015, 18 (05) :545-559