NIH Policy and Ethics of Record Linkage Workshop

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Record Linkage Workshop </li> </ol> </nav> </div> </div> <div class="row row-offcanvas row-offcanvas-left clearfix"> <main class="main-content col" id="content" role="main"> <section class="section"> <a id="main-content" tabindex="-1"></a> <div id="block-system-main-block" class="block block-system block-system-main-block"> <div class="content"> <article data-history-node-id="27878" about="/news/nih-policy-and-ethics-of-record-linkage-workshop" class="node node--type-news node--view-mode-full clearfix"> <header> </header> <div class="node__content clearfix"> <p class="publishdate">Tuesday, June 29, 2021</p> <p class="subtitle">Registration now open for June 29-30 workshop</p> <div class="featured-media"> <div class="field field--name-field-image field--type-image field--label-hidden field__item"> <img loading="lazy" src="/sites/default/files/shutterstock_1099238117_790x790_0.png" width="220" height="220" alt="" typeof="foaf:Image" /> </div> </div> <div class="text-formatted field field--name-field-news-description field--type-text-with-summary field--label-hidden field__item"><p><em><strong>UPDATE as of Aug. 13: Recordings are now available from this workshop. </strong></em><a class="video-link" href="https://youtu.be/nf-41kEOows" rel="nopener"><em><strong>Watch Day 1</strong></em></a><em><strong>  </strong></em><a class="video-link" href="https://youtu.be/SjVJhg7BhRE" rel="nopener"><em><strong>Watch Day 2</strong></em></a></p><p><a class="button blue" href="https://datascience.nih.gov/nih-policy-and-ethics-of-record-linkage-workshop-summary"><em><strong>Read the Summary</strong></em></a></p><p>The National Institutes of Health (NIH) Office of Data Science Strategy (ODSS) and the National Library of Medicine (NLM) will host the NIH Policy and Ethics of Record Linkage Workshop on June 29 from 1 to 4 p.m. EDT and June 30 from 1 to 4:30 p.m. EDT. The goal of this workshop is to examine the benefits and challenges of record linkages for the purpose of biomedical research, specifically considering:</p><ul><li>Privacy and Security of Record Linkage</li><li>Participant Perspectives on Record Linkage</li><li>Ethical Issues Related to Record Linkage</li></ul><p>Attendees are invited to observe and listen to presentations and provide thoughts and questions in the Question/Answer box during presentations, panel discussion, and report outs. Breakout group discussions will be invitation only and not viewable to the public; however, the discussions will be summarized during a report out session.</p><p>Individuals who need interpreting services and/or other reasonable accommodations to participate in this event should contact the ODSS at <a href="/cdn-cgi/l/email-protection#046065706577676d616a6761446a6d6c2a636b72"><span class="__cf_email__" data-cfemail="492d283d283a2a202c272a2c09272021672e263f">[email protected]</span></a> or the Federal Relay Service at 800-877-8339. Requests should be made at least three days in advance of the event.</p><h4><strong>Background</strong></h4><p>With the onset of COVID-19, the NIH has been exploring the utility of linking research participant data within and across NIH supported data repositories. The impetus for this workshop is to discuss policy considerations and ethical challenges associated with linking data of research participants across NIH resources. Speakers and participants with a variety of technical and professional backgrounds have been invited to provide insights. The workshop will feature an overview of record linkage approaches and a description of use cases and in breakout group discussions, explore privacy and security of record linkage, participant perspectives on record linkage, and ethical issues related to record linkage. The workshop will conclude with an enumeration of additional areas requiring exploration.</p><p><a class="button blue" href="/sites/default/files/Policy-and-Ethics-of-Record-Linkage-Bios.pdf" title="PDF, 458.98 KB">Speaker Bios</a> <a class="button blue" href="https://join.slack.com/t/policyandethi-0zv4165/shared_invite/zt-rl30lru9-KL9RufKi9fWmGB3dL19mLg">Join the Slack Channel</a></p><h3><strong>Agenda</strong></h3><table class="responsive-data-table schedule-table"><caption>Day One: Tuesday, June 29, 2021</caption><thead><tr><th><strong>Start Time (EDT)</strong><br><em>(minutes)</em></th><th><strong>Topic</strong></th><th colspan="4"><strong>Presenter</strong></th></tr></thead><tbody><tr><td><strong>1:00 PM </strong><br><em>(5 minutes)</em></td><td>Opening Remarks</td><td colspan="4"><strong>Susan Gregurick</strong>, <strong>Ph.D</strong>.<br><em>Associate Director for Data Science and Director of the ODSS, NIH</em></td></tr><tr><td><strong>1:05 PM </strong><br><em>(25 minutes)</em></td><td>Overview of the Workshop</td><td colspan="4"><strong>Pilar Ossorio, J.D., Ph.D.</strong> <strong>(Chair)</strong><br><em>Professor of Law and Bioethics, University of Wisconsin-Madison Law School</em></td></tr><tr><td rowspan="3"><strong>1:30 PM </strong><br><em>(45 minutes)</em></td><td rowspan="3">Ongoing NIH Pilots and Considerations of Record Linkage</td><td colspan="4"><strong>Alastair Thomson </strong><br><em>Chief Information Officer, National Heart, Lung, and Blood Institute, NIH</em></td></tr><tr><td colspan="4"><strong>Sam Michael </strong><br><em>Chief Information Officer, National Center for Advancing Translational Sciences, NIH</em></td></tr><tr><td colspan="4"><strong>Lynne Penberthy, M.D., M.P.H.</strong><br><em>Associate Director, Surveillance Research Program, National Cancer Institute, NIH</em></td></tr><tr><td><strong>2:15 PM </strong><br><em>(10 minutes)</em></td><td>Break</td><td colspan="4"><p class="text-align-center"><strong> </strong></p></td></tr><tr><td><strong>2:25 PM </strong><br><em>(85 minutes)</em></td><td><strong>Session: Privacy and Security of Record Linkage</strong></td><td colspan="4"><strong> </strong></td></tr><tr><td><strong>2:25 PM </strong><br><em>(10 minutes)</em></td><td>Introduction</td><td colspan="4"><strong>Anthony Solomonides, DPhil</strong><br><em>Program Director, Outcomes Research and Biomedical Informatics, NorthShore University Health System</em></td></tr><tr><td><strong>2:35 PM </strong><br><em>(45 minutes)</em></td><td>Breakout Group* Discussions</td><td>Group 1 Moderator:<br><strong>Richard Sharp, Ph.D.</strong></td><td><p>Group 2 Moderator:<br><strong>Anthony Solomonides, DPhil</strong></p><p> </p></td><td>Group 3 Moderator:<br><strong>Sharon Terry, M.A.</strong></td><td>Group 4 Moderator:<br><strong>Pilar Ossorio, J.D., Ph.D.</strong></td></tr><tr><td><strong>3:20 PM </strong><br><em>(10 minutes)</em></td><td>Break</td><td colspan="4"> </td></tr><tr><td><strong>3:30 PM </strong><br><em>(20 minutes)</em></td><td>Report Outs from Each Breakout Group and Discussion</td><td colspan="4"><strong>Anthony Solomonides, DPhil (Moderator)</strong><br><em>Program Director, Outcomes Research and Biomedical Informatics, NorthShore University Health System</em></td></tr><tr><td><strong>3:50 PM </strong><br><em>(10 minutes)</em></td><td>Considerations and Wrap-Up</td><td colspan="4"><strong>Patricia Flatley Brennan, RN, Ph.D. </strong><br><em>Director, NLM, NIH</em></td></tr><tr><td><strong>4:00 PM</strong></td><td><strong>Adjourn</strong></td><td colspan="4"><p class="text-align-center"><strong> </strong></p></td></tr></tbody></table><p><em>*Breakout sessions are by invitation only; general registrants will not be able to view the discussions, but a workshop report will be made available shortly after the workshop is completed.</em></p><p><strong> </strong></p><table class="responsive-data-table schedule-table"><caption>Day Two: Wednesday, June 30, 2021</caption><thead><tr><th><strong>Start Time (EDT)</strong><br><em>(minutes)</em></th><th><strong>Topic</strong></th><th colspan="4"><strong>Presenter</strong></th></tr></thead><tbody><tr><td><strong>1:00 PM </strong><br><em>(5 minutes)</em></td><td>Welcome Back Opening</td><td colspan="4"><strong>Susan Gregurick</strong>, <strong>Ph.D</strong>.<br><em>Associate Director for Data Science and Director of the ODSS, NIH</em></td></tr><tr><td><strong>1:05 PM </strong><br><em>(85 minutes)</em></td><td><strong>Session: Participant Perspectives of Record Linkage</strong></td><td colspan="4"> </td></tr><tr><td><strong>1:05 PM </strong><br><em>(10 minutes)</em></td><td>Introduction</td><td colspan="4"><strong>Sharon Terry, M.A.</strong><br><em>President and Chief Executive Officer, Genetic Alliance</em></td></tr><tr><td><strong>1:15 PM </strong><br><em>(45 minutes)</em></td><td>Breakout Group* Discussions</td><td>Group 1 Moderator:<br><strong>Richard Sharp, Ph.D.</strong></td><td>Group 2 Moderator:<br><strong>Anthony Solomonides, DPhil</strong></td><td>Group 3 Moderator:<br><strong>Sharon Terry, M.A.</strong></td><td>Group 4 Moderator:<br><strong>Pilar Ossorio, J.D., Ph.D.</strong></td></tr><tr><td><strong>2:00 PM</strong><br><em>(10 minutes)</em></td><td>Break</td><td colspan="4"><strong> </strong></td></tr><tr><td><strong>2:10 PM </strong><br><em>(20 minutes)</em></td><td>Report Outs from Each Breakout Group and Discussion</td><td colspan="4"><strong>Sharon Terry, M.A. (Moderator)</strong><br><em>President and Chief Executive Officer, Genetic Alliance</em></td></tr><tr><td><strong>2:30 PM </strong><br><em>(85 minutes)</em></td><td><strong>Session: Ethics of Record Linkage</strong></td><td colspan="4"><strong> </strong></td></tr><tr><td><strong>2:30 PM </strong><br><em>(10 minutes)</em></td><td>Introduction</td><td colspan="4"><strong>Richard Sharp, Ph.D. </strong><br><em>Director, Biomedical Ethics Program, Center for Individualized Medicine Bioethics Program and the Clinical and Translational Research Ethics Program, Mayo Clinic</em></td></tr><tr><td><strong>2:40 PM </strong><br><em>(45 minutes)</em></td><td>Breakout Group* Discussion</td><td>Group 1 Moderator:<br><strong>Richard Sharp, Ph.D.</strong></td><td>Group 2 Moderator:<br><strong>Anthony Solomonides, DPhil</strong></td><td>Group 3 Moderator:<br><strong>Sharon Terry, M.A.</strong></td><td>Group 4 Moderator<br><strong>Pilar Ossorio, J.D., Ph.D.</strong></td></tr><tr><td><strong>3:25 PM </strong><br><em>(10 minutes)</em></td><td>Break</td><td colspan="4"> </td></tr><tr><td><strong>3:35 PM </strong><br><em>(20 minutes)</em></td><td>Report Outs from Breakout Groups and Discussion</td><td colspan="4"><strong>Richard Sharp, Ph.D. (Moderator)</strong><br><em>Director, Biomedical Ethics Program, Center for Individualized Medicine Bioethics Program and the Clinical and Translational Research Ethics Program, Mayo Clinic</em></td></tr><tr><td rowspan="2"><strong>3:55 PM </strong><br><em>(30 minutes)</em></td><td rowspan="2">Connecting Main Ideas Panel Discussion</td><td colspan="4"><strong>Spero Manson, Ph.D. (Moderator)</strong><br><em>Professor of Public Health and Psychiatry, Director of Centers for American Indian and Alaska Native Health, and Associate Dean of Research, Colorado School of Public Health, University of Colorado Denver’s Anschutz Medical Center</em></td></tr><tr><td colspan="4"><strong>Panelists: Sharon Terry, M.A., Richard Sharp, Ph.D., Pilar Ossorio, J.D., Ph.D., Anthony Solomonides, DPhil</strong></td></tr><tr><td><strong>4:25 PM </strong><br><em>(5 minutes)</em></td><td>Considerations and Wrap-Up</td><td colspan="4"><strong>Patricia Flatley Brennan, RN, Ph.D. </strong><br><em>Director, NLM, NIH</em></td></tr><tr><td><strong>4:30 PM</strong></td><td><strong>Adjourn</strong></td><td colspan="4"><p class="text-align-center"><strong> </strong></p></td></tr></tbody></table><p><em>*Breakout sessions are by invitation only; general registrants will not be able to view the discussions, but a workshop report will be made available shortly after the workshop is completed.</em></p></div> <section class="field field--name-comment-node-news field--type-comment field--label-hidden comment-wrapper"> </section> </div> </article> </div> </div> </section> </main> </div> <div class="row lastupdated"> <p>This page last reviewed on May 24, 2024</p> </div> </div> </div> <footer class="site-footer-wrap"> <div class="container"> <div class="site-footer-bottom-wrap"> <section class="row l-region l-region--footer-fifth"> <div id="block-block-content-83129f25-f6bb-41ba-af81-cab85348da55" class="block-content-basic block block-block-content block-block-content83129f25-f6bb-41ba-af81-cab85348da55"> <div class="content"> <div class="text-formatted field field--name-body field--type-text-with-summary field--label-hidden field__item"><footer class="l-footer" role="contentinfo"> <h2 class="element-invisible"> Footer</h2> <ul> <li> <a href="/">Office of Data Science Strategy</a></li> <li> <a href="/sitemap">Site Map</a></li> <li> <a href="https://www.nih.gov/web-policies-notices">Web Policies and Notices</a></li> <li> <a href="https://www.nih.gov/institutes-nih/nih-office-director/office-communications-public-liaison/freedom-information-act-office">FOIA</a></li> <li> <a href="https://edi.nih.gov/no-fear-act">No Fear Act</a></li> <li><a href="https://www.hhs.gov/vulnerability-disclosure-policy/index.html">HHS Vulnerability Disclosure</a></li> </ul> <ul> <li> <a href="https://dpcpsi.nih.gov/">DPCPSI Home</a></li> <li> <a href="https://www.nih.gov/">NIH Home</a></li> <li> <a href="https://oig.hhs.gov/">Office of the Inspector General</a></li> <li> <a href="https://www.usa.gov/">USA.gov</a></li> </ul> <p> NIH…Turning Discovery Into Health<sup>®</sup></p> <p> National Institutes of Health, 9000 Rockville Pike, Bethesda, Maryland 20892</p> <p> <a href="https://www.hhs.gov/">U.S. Department of Health and Human Services</a></p>  </footer>  <div class="back-to-top" style="display: block;"><a href="#" role="button"><span class="icon-arrow-up"></span><span class="text">Back to Top</span></a></div></div> </div> </div> </section> </div> </div> </footer> </div> </div> </div> <script data-cfasync="false" src="/cdn-cgi/scripts/5c5dd728/cloudflare-static/email-decode.min.js"></script><script type="application/json" data-drupal-selector="drupal-settings-json">{"path":{"baseUrl":"\/","pathPrefix":"","currentPath":"node\/27878","currentPathIsAdmin":false,"isFront":false,"currentLanguage":"en"},"pluralDelimiter":"\u0003","suppressDeprecationErrors":true,"gtm":{"tagId":null,"settings":[],"tagIds":["GTM-T9K42VKD"]},"gtag":{"tagId":"G-Y60CQSK2FH","otherIds":[],"events":[],"additionalConfigInfo":[]},"ajaxPageState":{"libraries":"eJxlkOsKwyAMhV_I1UeSpGbWTU0xKWvffraMwvRP4HyHnFyQWUUrrA6h1sgWK4Gf65bRYO-FxAjpIXqkWMLoN_qWEWcSgUDiPktUGv3CnszMiSvybj09YUt6AxdLyyXbaUO7nvOsr9sKafpJE5hDIqcQbGil1xO8YP-H2ZS42HurS7U0qqXdCq0cGme5cPcAOUQpWwQho-gyBchUthGcDSRfEVuPQQ","theme":"nih","theme_token":null},"ajaxTrustedUrl":[],"colorbox":{"opacity":"0.85","current":"{current} of {total}","previous":"\u00ab Prev","next":"Next \u00bb","close":"Close","maxWidth":"98%","maxHeight":"98%","fixed":true,"mobiledetect":true,"mobiledevicewidth":"480px"},"data":{"extlink":{"extTarget":true,"extTargetNoOverride":true,"extNofollow":true,"extNoreferrer":true,"extFollowNoOverride":false,"extClass":"ext","extLabel":"(link is external)","extImgClass":false,"extSubdomains":true,"extExclude":"^(https?:\\\/\\\/)?(\\S*)?(\\.gov)(\\S*)?$","extInclude":"","extCssExclude":"","extCssExplicit":"","extAlert":true,"extAlertText":"You are leaving the Office of Data Science Strategy website.\r\n\r\nThis external link provides additional information that is consistent with the intended purpose of this site. 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