Examining Data Repository Guidelines for Qualitative Data Sharing

Qualitative data provide rich information on research questions in diverse fields. Recent calls for increased transparency and openness in research emphasize data sharing. However, qualitative data sharing has yet to become the norm internationally and is particularly uncommon in the United States. Guidance for archiving and secondary use of qualitative data is required for progress in this regard. In this study, we review the benefits and concerns associated with qualitative data sharing and then describe the results of a content analysis of guidelines from international repositories that archive qualitative data. A minority of repositories provide qualitative data sharing guidelines. Of the guidelines available, there is substantial variation in whether specific topics are addressed. Some topics, such as removing direct identifiers, are consistently addressed, while others, such as providing an anonymization log, are not. We discuss the implications of our study for education, best practices, and future research.

[1]  E. Hulen,et al.  Implementing Qualitative Data Management Plans to Ensure Ethical Standards in Multi-Partner Centers , 2016, Journal of empirical research on human research ethics : JERHRE.

[2]  Bridget C. O’Brien,et al.  Standards for Reporting Qualitative Research: A Synthesis of Recommendations , 2014, Academic medicine : journal of the Association of American Medical Colleges.

[3]  J. Wattis,et al.  The scope for qualitative methods in research and clinical trials in dementia. , 2004, Age and ageing.

[4]  Jennifer Pearson,et al.  Ethical Issues in the Reuse of Qualitative Data , 2014, Qualitative health research.

[5]  Leif D. Nelson,et al.  False-Positive Psychology , 2011, Psychological science.

[6]  R. Nuzzo.  How scientists fool themselves – and how they can stop , 2015, Nature.

[7]  Arja Kuula,et al.  Methodological and Ethical Dilemmas of Archiving Qualitative Data , 2011 .

[8]  C. Begley,et al.  Drug development: Raise standards for preclinical cancer research , 2012, Nature.

[9]  Lisa Cliggett.  Qualitative Data Archiving in the Digital Age: Strategies for Data Preservation and Sharing , 2013 .

[10]  S. Merriam.  Qualitative research in practice : examples for discussion and analysis , 2002 .

[11]  Johnny Saldaña,et al.  The Coding Manual for Qualitative Researchers , 2009 .

[12]  Michael Emmison,et al.  Qualitative Researchers’ Understandings of Their Practice and the Implications for Data Archiving and Sharing , 2009 .

[13]  Louise Corti,et al.  Learning to manage and share data: jump-starting the research methods curriculum , 2015 .

[14]  Thomas A. Schwandt.  The SAGE Dictionary of Qualitative Inquiry , 2001 .

[15]  Michael R. Jackson,et al.  Resistance to qual/quant parity: Why the “paradigm” discussion can’t be avoided. , 2015 .

[16]  V. Rajput.  Is Rapid Organ Recovery a Good Idea? An Exploratory Study of the Public's Knowledge and Attitudes , 2011 .

[17]  N. Hoffart.  Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory , 2000 .

[18]  H. Bauchner,et al.  [Sharing clinical trial data: a proposal from the International Committee of Medical Journal Editors]. , 2016, Ugeskrift for laeger.

[19]  Paul J. Lavrakas,et al.  Applied Qualitative Research Design: A Total Quality Framework Approach , 2015 .

[20]  Andrea Christine Jesser.  Archiving Qualitative Data: Infrastructure, Acquisition, Documentation, Distribution. Experiences from WISDOM, the Austrian Data Archive , 2011 .

[21]  A. Waterman,et al.  Is Rapid Organ Recovery a Good Idea? An Exploratory Study of the Public's Knowledge and Attitudes , 2009, American journal of transplantation : official journal of the American Society of Transplantation and the American Society of Transplant Surgeons.

[22]  Veerle Van den Eynden,et al.  Managing and sharing data: Best practice for researchers , 2011 .

[23]  Celia Kitzinger,et al.  Anonymising interview data: challenges and compromise in practice , 2015, Qualitative research : QR.

[24]  V. Bond,et al.  A systematic review of qualitative findings on factors enabling and deterring uptake of HIV testing in Sub-Saharan Africa , 2013, BMC Public Health.

[25]  Odette Parry,et al.  Whose Data are They Anyway? , 2004 .

[26]  Heather A. Piwowar,et al.  Sharing Detailed Research Data Is Associated with Increased Citation Rate , 2007, PloS one.

[27]  J. DuBois,et al.  Is It Time to Share Qualitative Research Data? , 2018, Qualitative psychology.

[28]  Gary King,et al.  Publication, Publication , 2006, PS: Political Science & Politics.

[29]  Bradley Malin,et al.  Never too old for anonymity: a statistical standard for demographic data sharing via the HIPAA Privacy Rule , 2011, J. Am. Medical Informatics Assoc..

[30]  C. Glenn Begley,et al.  Raise standards for preclinical cancer research , 2012 .

[31]  S. Downe,et al.  Meta-synthesis method for qualitative research: a literature review. , 2005, Journal of advanced nursing.

[32]  Joachim Wackerow,et al.  A qualitative data model for DDI , 2013 .

[33]  Monique Antoinette Guishard.  Now’s Not the Time! Qualitative Data Repositories on Tricky Ground: Comment on DuBois et al. (2017). , 2017 .

[34]  Veerle Van den Eynden,et al.  Managing and Sharing Research Data: A Guide to Good Practice , 2014 .

[35]  Michael W. Ross,et al.  Qualitative data are not just quantitative data with text but data with context: On the dangers of sharing some qualitative data: Comment on Dubois et al. (2018). , 2018, Qualitative Psychology.

[36]  Louise Corti,et al.  Progress and Problems of Preserving and Providing Access to Qualitative Data for Social Research—The International Picture of an Emerging Culture , 2000 .

[37]  R. Brook,et al.  Consensus methods: characteristics and guidelines for use. , 1984, American journal of public health.