Yours, Mine, Ours……data sharing in clinical research

Abstract

There is a growing movement towards sharing research data as a strategy for maximising the impact and accelerating knowledge generation. Data sharing can also contribute to promoting academic rigor and integrity. Data sharing is common across many different disciplines including basic and life sciences. 1 Krumholz H.M. Waldstreicher J. The Yale Open Data Access (YODA) Project – A mechanism for sharing data. N Engl J Med. 2016; 375: 403-405 Crossref PubMed Scopus (89) Google Scholar For example, data sharing in the field of genomics has demonstrated considerable value for the advancement of knowledge with little additional expense. 2 Pisani E. AbouZahr C. Sharing health data: good intentions are not enough. Bull World Health Organ. 2010; 88: 462-466 Crossref PubMed Scopus (94) Google Scholar While data sharing may be common in other academic disciplines, it is yet to become standard practice in health research. In the health context there is enormous potential for the advancement of knowledge if consistent approaches to sharing health research and service data are applied. Recognising the value of sharing data, leading organisations worldwide have made recommendations regarding the sharing of research data. 3 Lo B. Sharing clinical trial data: maximizing benefits, minimizing risk. JAMA. 2015; 313: 793-794 Crossref PubMed Scopus (95) Google Scholar , 4 Committee on Strategies for Responsible Sharing of Clinical Trial Data, Board on Health Sciences Policy, Institute of Medicine. The National Academies Collection: Reports funded by National Institutes of Health. In: Discussion framework for clinical trial data sharing: guiding principles, elements, and activities. Washington (DC): National Academies Press (US). Google Scholar , 5 Vickers A.J. Making raw data more widely available. BMJ (Clinical research ed). 2011; 342: d2323 Crossref PubMed Scopus (27) Google Scholar , 6 National Health and Medical Research Council. NHMRC Statement on Data Sharing. Cited 29 July 2017. Available from: https://www.nhmrc.gov.au/grants-funding/policy/nhmrc-statement-data-sharing. Google Scholar , 7 Taichman D.B. Sahni P. Pinborg A. Peiperl L. Laine C. James A. Hong S.-T. Haileamlak A. Gollogly F. Godlee L.F. Frizelle F.A. Florenzano F. Drazen J.M. Bauchner H. Baethge C. Backus J. Data Sharing Statements for Clinical Trials: A Requirement of the International Committee of Medical Journal Editors. Ann Int Med. 2017; 167: 63-65 Crossref PubMed Scopus (2) Google Scholar This is an important first step to establishing data sharing as the norm in clinical research. There are, however, several issues that will need to be collectively addressed before data sharing is to become fully embedded within the culture of clinical research.