Promotion of public access and share of raw data from scientific research

Aleixandre-Benavent, Rafael; Alonso-Arroyo, Adolfo; Vidal-Infer, Antonio; Catalá-López, Ferrán
doi:10.1016/j.medcle.2014.04.003
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    "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0005" class="elsevierStylePara elsevierViewall">These past years&#44; many initiatives have been developed in order to promote open access to publications and scientific data&#44; including public access to clinical drug trial results&#44; as described in the recent paper by Dal-R&#233; and others before him&#46;<a class="elsevierStyleCrossRefs" href="#bib0055"><span class="elsevierStyleSup">1&#8211;3</span></a></p><p id="par0010" class="elsevierStylePara elsevierViewall">However&#44; free and open access to raw data from scientific research that has or has not been financed with public funds is still in the making&#44; though the benefits arising from its shared use have been clearly established &#40;see the summary on advantages and determinants in <a class="elsevierStyleCrossRef" href="#tbl0005">Table 1</a>&#41;&#46;</p><elsevierMultimedia ident="tbl0005"></elsevierMultimedia><p id="par0015" class="elsevierStylePara elsevierViewall">At the time of sharing scientific data&#44; some disadvantages arise from researchers themselves&#44; their potential beneficiaries and society in general&#46; These include financial barriers &#40;payment of reutilization fees and payment to magazines for storage on their websites&#41;&#44; legal barriers &#40;mainly copyright and personal data protection&#41; and infrastructures &#40;the need to create&#44; manage and maintain data storage&#41;&#46;<a class="elsevierStyleCrossRef" href="#bib0070"><span class="elsevierStyleSup">4</span></a> In medicine and Health Sciences&#44; there are important&#44; practical and ethical reasons that must be recognized in order to protect the parties involved in research and publication of the results&#58; patients &#40;or participants in the studies&#41;&#44; researchers interested in the results obtained&#44; and other end users &#40;clinicians&#44; sanitary authorities&#44; etc&#46;&#41;&#46; The lack of recognition and incentives is another unresolved barrier that hinders the establishment of a collaborative culture with data exchange&#46; In order to overcome this disadvantage&#44; assessment committees should reward researchers who share their data and promote the switch from a &#8220;publish articles and perish&#8221; mentality to &#8220;publish also the data or perish&#44;&#8221; as it is suggested by the Cancer Biomedical Informatics Grid Data Sharing&#46;<a class="elsevierStyleCrossRef" href="#bib0075"><span class="elsevierStyleSup">5</span></a></p><p id="par0020" class="elsevierStylePara elsevierViewall">The Organisation for Economic Cooperation and Development points out that the data on which public-funded research is based must&#44; if possible&#44; be open and available to the community&#46;<a class="elsevierStyleCrossRef" href="#bib0080"><span class="elsevierStyleSup">6</span></a> On the other hand&#44; within the Seventh Framework Programme of the European Union&#44; the Horizon 2020 Programme considers it essential to give open access to research raw data in order to overcome the existing gap between research and the communication of its results to society&#46; Open access to data will involve both citizens and society&#44; thus improving the transparency of the scientific process&#46;<a class="elsevierStyleCrossRef" href="#bib0085"><span class="elsevierStyleSup">7</span></a> Some scientific magazines are also adopting editorial policies in order to allow all data on which publications are based to be stored as supplemental material&#46; This includes <span class="elsevierStyleItalic">Science</span>&#44; the publications of the <span class="elsevierStyleItalic">Nature</span> group&#44; the <span class="elsevierStyleItalic">British Medical Journal</span> and <span class="elsevierStyleItalic">Annals of Internal Medicine</span>&#44; together with the magazines of the <span class="elsevierStyleItalic">Public Library of Science</span>&#46;<a class="elsevierStyleCrossRef" href="#bib0090"><span class="elsevierStyleSup">8</span></a></p><p id="par0025" class="elsevierStylePara elsevierViewall">There are several worldwide initiatives for the promotion of free access to raw scientific research data&#44; including projects such as <span class="elsevierStyleItalic">Open Access Infrastructure for Research in Europe</span> &#40;OpenAire&#41; &#40;<a href="http://www.openaire.eu/es">http&#58;&#47;&#47;www&#46;openaire&#46;eu&#47;es</a>&#41; and Zenodo &#40;open digital data storage created by OpenAire and <span class="elsevierStyleItalic">the European Organization for Nuclear Research</span>-CERN &#40;<a href="http://zenodo.org/">http&#58;&#47;&#47;zenodo&#46;org</a>&#41;&#46;<a class="elsevierStyleCrossRef" href="#bib0090"><span class="elsevierStyleSup">8</span></a> It is also in Spain where projects to encourage the exchange and reuse of raw research data are being carried out&#44; such as &#8220;<span class="elsevierStyleItalic">Opendatascience</span>&#44; resource centre for the preservation and management of open research data&#8221; &#40;<a href="http://www.datasea.es/dt/">http&#58;&#47;&#47;www&#46;datasea&#46;es&#47;dt&#47;</a>&#41;&#44; financed by the R&#43;D&#43;i programme of the Ministry of Economy and Competitiveness&#44; and the project &#8220;Strategies for Managing and Promoting the Sharing of Scientific Data on Health&#8221; &#40;<a href="http://www.healthdatasea.es/">http&#58;&#47;&#47;www&#46;healthdatasea&#46;es&#47;</a>&#41;&#44; financed by Fundaci&#243;n Mapfre&#46; Among the actions of said projects&#44; awareness campaigns stand out&#44; which are headed to convince magazine authors and publishers about the benefits of &#8220;freeing&#8221; and sharing raw research data&#44; thus gaining more optimal use&#46; The publication of good practice guidelines also stands out&#44; which are intended to inform and advise on every issue related to data sharing&#46;<a class="elsevierStyleCrossRefs" href="#bib0095"><span class="elsevierStyleSup">9&#44;10</span></a></p><p id="par0030" class="elsevierStylePara elsevierViewall">In conclusion&#44; at the current stage&#44; technical advice and the necessary infrastructure should be made available to researchers so that they can carry out these practices&#46; In addition&#44; the development of an agreed regulation between all involved parties should be promoted&#44; which would include the description of procedures in order to avoid improper or fraudulent use&#46; On the other hand&#44; it is necessary to foster a cultural change from the traditional patterns of information dissemination&#44; mainly based on &#8220;data property&#8221;&#44; to new exchange&#44; dissemination and collective use models&#46;<a class="elsevierStyleCrossRefs" href="#bib0090"><span class="elsevierStyleSup">8&#8211;10</span></a></p><span id="sec0005" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0005">Funding</span><p id="par0035" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleGrantSponsor" id="gs1">National R&#43;D&#43;i Plan&#44; 2012</span>&#44; <span class="elsevierStyleGrantSponsor" id="gs2">Ministry of Economy and Competitiveness</span>&#46; <span class="elsevierStyleGrantSponsor" id="gs3">Fundaci&#243;n Mapfre</span>&#44; 2012 convocation&#46;</p></span></span>"
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                  \t\t\t\t" class=""><tbody title="tbody"><tr title="table-row"><td class="td" title="table-entry  " align="left" valign="top"><span class="elsevierStyleItalic">&#40;A&#41; Advantages of sharing research data</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>It fosters advances in research and scientific debate&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>It promotes innovation&#44; since investigators have greater opportunities to discover new knowledge&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>It increases the possibilities of working with large data volumes and developing blind statistical analysis&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>It encourages additional discoveries&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>It enables new collaborations between data users and developers&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>It improves transparency&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>It prevents frauds by allowing the verification of research results&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>It promotes the improvement and validation of research methods&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>It reduces the cost and&#47;or improves the efficiency of new research by avoiding the repetition of expensive projects that use the same previously employed sanitary interventions&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>It increases the feasibility and impact of the research&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>It promotes the research that generated the data and its results&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>It provides greater credit to the researcher who generated the data&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>It contributes with resources for education and training&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " align="left" valign="top"><span class="elsevierStyleItalic">&#40;B&#41; Determinants to be taken into account when sharing research data</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>What data will the research generate&#63;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Which data will be valuable for other researchers and&#44; therefore&#44; shareable&#63;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Has the informed consent been requested to those patients whose records will be used to obtain data&#63;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>In which format should the shareable data be generated&#63;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Which are the quality standards to be applied to data in order to achieve effective sharing&#63;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Where will the available data be stored&#63;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Which limits will be set so that other researchers can access the data&#63;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Which type of intellectual property security or protection is required&#63;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>How will the key data groups be guaranteed in order to ensure their value in the long term&#63;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Which resources are needed for data storage&#63;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr></tbody></table>
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