Overview of content related to 'the national archives' http://www.ariadne.ac.uk/taxonomy/term/14159/all?article-type=&term=&organisation=&project=&author=graham%20pryor&issue= RSS feed with Ariadne content related to specified tag en The Fourth DCC-RIN Research Data Management Forum http://www.ariadne.ac.uk/issue63/rdmf4-rpt <div class="field field-type-text field-field-teaser-article"> <div class="field-items"> <div class="field-item odd"> <p><a href="/issue63/rdmf4-rpt#author1">Martin Donnelly</a> and <a href="/issue63/rdmf4-rpt#author2">Graham Pryor</a> report on the fourth Research Data Management Forum event, on the theme "Dealing with Sensitive Data: Managing Ethics, Security and Trust," organised by the Digital Curation Centre (DCC) and Research Information Network (RIN) in Manchester, England, over 10 - 11 March, 2010.</p> </div> </div> </div> <p>The fourth meeting of the Research Data Management Forum was held in Manchester on 10 and 11 March 2010, co-sponsored by the Digital Curation Centre (DCC) [<a href="#1">1</a>] and the Research Information Network (RIN) [<a href="#2">2</a>]. The event took <em>Dealing with Sensitive Data: Managing Ethics, Security and Trust</em> as its theme [<a href="#3">3</a>].</p> <h2 id="Day_1:_10_March_2010">Day 1: 10 March 2010</h2> <p>DCC Associate Director <strong>Liz Lyon</strong> and RIN Head of Programmes <strong>Stéphane Goldstein </strong>welcomed the 45 delegates to the event, and began by introducing the keynote speaker, <strong>Iain Buchan</strong>, Professor of Public Health Informatics and Director of the Northwest Institute for Bio-Health Informatics (NIBHI), University of Manchester.</p> <p>Iain's talk was entitled <em>Opening Bio-Health Data and Models Securely and Effectively for Public Benefit</em>, and addressed three main questions:</p> <ol> <li>Where does the public's health need digital innovation?</li> <li>How can research curators promote this innovation (and what are the implications for Ethics, Security and Trust)?</li> <li>Is a framework required (covering the Social Contract and a digital and operational infrastructure)?</li> </ol> <p>A major theme in contemporary healthcare is that of <em>prevention</em>, and the need for proactive 'citizen buy-in' in order to avert NHS bankruptcy, a need supported by the use of 'persuasive technologies.' There is, however, a disconnect between the proactive public health model, and the reactive clinical model, and between expectations and available resource. 'Digital bridges', composed of new information technologies, are used to close the gaps between primary and secondary care, and to link disease-specific pathways.</p> <p>Iain touched on the impact that the data deluge is having on healthcare, reflecting that knowledge can no longer be managed solely by reading scholarly papers: the datasets and structures now extend far beyond any single study's observations. It is now necessary to build data-centred models, and to interrogate them for clusters via dedicated algorithms.</p> <p>However, there are holes in the datasets – for example, clinical trials exclude women of childbearing age and subjects undergoing certain treatments – hence electronic health records must be mined in order to fill these gaps, but this can be problematised by a lack of useful metadata, leading to 'healthcare data tombs,' repositories of health records lacking the contextual information to make them useful. Such data resources may be worse than useless: they may be misinformation.</p> <p>Comprehensible social networks with user-friendly interfaces can be used to improve the quality of metadata, based on the principle that more frequent use leads to better quality information. These networks can also bridge the Balkanisation that can occur when different groups tackle the same issue from varying standpoints (e.g. examining obesity from dietary- and exercise-based perspectives, but not sharing data across these boundaries.) The vision is for a joint, open, unifying and interdisciplinary framework and understanding wherein resources and expertise are shared. Of course, crossing these divides is accompanied by a raft of trust and security issues, and Iain described the various measures that are implemented to cope with them.</p> <p>Iain discussed the ethical issues surrounding wider use of health record information across the NHS, including consent (opt-in versus opt-out), the right (or lack thereof) of an investigator to go to a patient directly, and – perhaps most controversially – whether it was actually <em>unethical </em>to allow a health dataset to go under-exploited. If this is indeed the case, it follows that there is a real need to audit the demonstrable good that is derived from datasets.</p> <p></p><p><a href="http://www.ariadne.ac.uk/issue63/rdmf4-rpt" target="_blank">read more</a></p> issue63 event report graham pryor martin donnelly bbc dcc jisc nhs research information network the national archives uk data archive university of bristol university of edinburgh university of london university of manchester algorithm archives curation data data management data set digital archive digital curation foi framework higher education infrastructure licence metadata preservation repositories research social networks standards ulcc Thu, 29 Apr 2010 23:00:00 +0000 editor 1551 at http://www.ariadne.ac.uk