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Health Research and the Privacy of Health Information - The HIPAA Privacy Rule - Institute of Medicine

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<table cellpadding="0" cellspacing="0" border="0" width="100%"> <tr> <td><a href="/web/20070818031433/http://www.iom.edu/"> <img src="/web/20070818031433im_/http://www.iom.edu/Layouts/iom_may_2005/Images/Header/iom_sub_1.gif" width="546" height="83" border="0" alt="Institute of Medicine."/></a> </td> <td width="100%"> <a href="/web/20070818031433/http://www.iom.edu/"><img src="/web/20070818031433im_/http://www.iom.edu/Layouts/iom_may_2005/Images/Header/iom_sub_repeater.gif" width="100%" height="83" border="0"/></a> </td> <td> <a href="/web/20070818031433/http://www.iom.edu/"><img src="/web/20070818031433im_/http://www.iom.edu/Layouts/iom_may_2005/Images/Header/iom_sub_endcap.gif" width="32" height="83" border="0"/></a> </td> </tr> </table> <img src="/web/20070818031433im_/http://www.iom.edu/Layouts/iom_may_2005/Images/pixel_clear.gif" width="1" height="5" border="0" alt=""/><br/> </td></tr></table> </td> </tr> <tr> <td><div id="Breadcrumb"> <a style="position:relative;top:0px;" href="/web/20070818031433/http://www.iom.edu/CMS/3740.aspx">Board on Health Sciences Policy</a>&nbsp;&nbsp;<span style="font-family:verdana;font-size:100%;">&gt;</span>&nbsp;&nbsp;<span style="position:relative;top:0px;">HIPAA Privacy Rule and Health Research</span> </div> </td> </tr> <tr> <td class="Default_Header"> <span id="Body__ctl0__ctl0_sectionheader_DefaultHeader"> <table cellspacing="0" cellpadding="0" border="0" width="100%"> <tr> <td><img src="/web/20070818031433im_/http://www.iom.edu/Layouts/iom_may_2005/Images/misc/arrowbox_neither_turquoise.gif" width="25" height="18" border="0"/> </td> <td><img id="Body__ctl0__ctl0_sectionheader_SectionImage" src="/web/20070818031433im_/http://www.iom.edu/Layouts/iom_may_2005/Images/section_banners/projectindex.gif" alt="" border="0"/> </td> <td width="100%"> <img src="/web/20070818031433im_/http://www.iom.edu/Layouts/iom_may_2005/Images/Section_banners/SectionRepeater.gif" height="18" width="100%"/> </td> <td><img src="/web/20070818031433im_/http://www.iom.edu/Layouts/iom_may_2005/Images/Section_banners/SectionEnd.gif" height="18" width="5" border="0"/> </td> </tr> </table> </span> <span style="font-size:2px;"><br/></span> </td> </tr> <tr> <td> <table cellspacing="0" cellpadding="0" border="0" width="100%"> <tr> <td width="100%" valign="top"> <table cellspacing="5" cellpadding="0" border="0" width="100%"> <tr> <td width="18" nowrap></td> </td> <td width="100%"> <table cellpadding="0" cellspacing="0" border="0" width="100%"> <tr> <td> <span class="Default_Title">Health Research and the Privacy of Health Information - The HIPAA Privacy Rule </span><br/> <img src="/web/20070818031433im_/http://www.iom.edu/Layouts/iom_may_2005/Images/spacer.gif" width="1" height="5" border="0" alt=""/><br/> <img src="/web/20070818031433im_/http://www.iom.edu/Layouts/iom_may_2005/Images/pixel_darkgray.gif" width="100%" height="1" border="0" alt=""/><br/> <table style="width:100%"> <tr> <td class="small" nowrap="true"><a id="Body__ctl0__ctl0_loader__ctl0_MoreInformation" href="https://web.archive.org/web/20070818031433/http://www8.nationalacademies.org/cp/projectview.aspx?key=HSPX-H-06-12-A">More Information</a></td> <td width="100%"></td> <td class="small" nowrap="true"> <!-- Declarations --> <!-- With regard to layouts, many Detailviews and other controls only differ by the look the email/print buttons. Therefore it makes sense to break the intended functionality, in order to save on redundancy.--> <a href="/web/20070818031433/http://www.iom.edu/CMS/3740/43729.aspx?printfriendly=true" target="_blank"><img src="/web/20070818031433im_/http://www.iom.edu/Layouts/iom_may_2005/Images/icons/icon_print.gif" alt="Print" border="0"/></a>&nbsp;&nbsp; <a href="https://web.archive.org/web/20070818031433/mailto:/?subject=Institute Of Medicine: HIPAA Privacy Rule and Health Research&amp;body=I thought you might find this link of interest. %0D%0DHIPAA Privacy Rule and Health Research %0Dhttp://www.iom.edu/Default.aspx?id=43729 %0D%0DExcerpt from the page: %0D%22An IOM committee will investigate the effects on health research of the Privacy Rule regulations implementing the Health Insurance Portability and Accountability Act of 1996 (HIPAA) section on Administrative Simplification and prepare a report. In conducting the study, the committee will: consider the range of study types, such as clinical trials, epidemiologic designs, research using tissue ...%22 "><img src="/web/20070818031433im_/http://www.iom.edu/Layouts/iom_may_2005/Images/icons/icon_email.gif" alt="Email" border="0"/></a> </td> </tr> </table> <img src="/web/20070818031433im_/http://www.iom.edu/Layouts/iom_may_2005/Images/spacer.gif" width="1" height="15" border="0"/><br/> <span id="Body__ctl0__ctl0_loader__ctl0_Content1"> <table border="0" cellpadding="0" cellspacing="0" width="100%"> <tr> <td> An IOM committee will investigate the effects on health research of the Privacy Rule regulations implementing the Health Insurance Portability and Accountability Act of 1996 (HIPAA) section on Administrative Simplification and prepare a report.&nbsp; In conducting the study, the committee will: <ol type="1"> <li>consider the range of study types, such as clinical trials, epidemiologic designs, research using tissue repositories and databases, public health research, and health services research, to the extent that available data and evidence allow&nbsp; <li>consider research carried out by the full range of sponsors: government, public and private academic, and for-profit sectors, including the pharmaceutical, biotechnology and medical device industries <li>review provisions of the Privacy Rule relevant to health research, including those dealing with authorizations and accounting for disclosures of personal health information, de-identification of data, reviews preparatory to research, and others, and on reviewing them, may identify provisions that merit priority attention and analysis <li>take into consideration issues of interpretation and implementation of the Privacy Rule, as well as of harmonization with overlapping provisions of the Common Rule and FDA regulations, which have been in existence much longer <li>examine the potential impact of the Rule on public health research, on the recruitment of research subjects for studies, on carrying out research internationally, and on research using data and biomaterials in databases and tissue repositories <li>consider the needs for privacy of identifiable personal health information and the value of such privacy to patients and the public</li></ol> <p>As data and evidence allow, the needs and benefits of patient privacy will be balanced against the needs, risks, and benefits of identifiable health information for various kinds of health research. The committee will formulate recommendations for alterations or retention of the status quo accordingly. <br> </td> </tr> </table> </span><br/><br/> <!-- Declarations --> <table cellpadding="2" cellspacing="0" border="0" width="100%"> <tr> <td colspan="4" height="1" class="ListSection"> <span id="Body__ctl0__ctl0_loader__ctl0_ProjectMeetings_EventListTitle">Project Meetings</span> </td> </tr> <tr valign="top"> <td width="20"> </td> <td> <a href="/web/20070818031433/http://www.iom.edu/CMS/3740/43729/43940.aspx">Meeting 4: Committee on Health Research and the Privacy of Health Information: The HIPAA Privacy Rule</a> </td> <td align="right" nowrap> Jun 19, 2008 </td> </tr> <tr valign="top"> <td width="20"> </td> <td class="altRow"> <a href="/web/20070818031433/http://www.iom.edu/CMS/3740/43729/43938.aspx">Meeting 3: Committee on Health Research and the Privacy of Health Information: The HIPAA Privacy Rule</a> </td> <td class="altRow" align="right" nowrap> Feb 14, 2008 </td> </tr> <tr valign="top"> <td width="20"> </td> <td> <a href="/web/20070818031433/http://www.iom.edu/CMS/3740/43729/43936.aspx">Meeting 2: Committee on Health Research and the Privacy of Health Information: The HIPAA Privacy Rule</a> </td> <td align="right" nowrap> Oct 1, 2007 </td> </tr> <tr valign="top"> <td width="20"> </td> <td class="altRow"> <a href="/web/20070818031433/http://www.iom.edu/CMS/3740/43729/43733.aspx">Meeting 1: Committee on Health Research and the Privacy of Health Information: The HIPAA Privacy Rule</a> </td> <td class="altRow" align="right" nowrap> Jun 14, 2007 </td> </tr> </table> <br/> <!-- Declarations --> <table cellpadding="2" cellspacing="0" border="0" width="100%"> <tr> <td height="1" colspan="2" class="ListSection"> Resources And Links </td> </tr> <tr> <td width="20"><img src="/web/20070818031433im_/http://www.iom.edu/images/iom_may_2005/pixel_clear.gif" width="20px" height="1px"/></td> <td width="100%"> <a href="/web/20070818031433/http://www.iom.edu/CMS/3740/43729/43949.aspx" title="PDF Adobe Acrobat, 267.65 KB"><img src="/web/20070818031433im_/http://www.iom.edu/Layouts/iom_may_2005/Images/icons/icon_floppydisk_small.gif" width="12" height="12" border="0"/> Background Paper </a> </td> </tr> <tr> <td width="20"><img src="/web/20070818031433im_/http://www.iom.edu/images/iom_may_2005/pixel_clear.gif" width="20px" height="1px"/></td> <td class="altRow" width="100%"> <a href="/web/20070818031433/http://www.iom.edu/CMS/3740/43729/43947.aspx" title="PDF Adobe Acrobat, 544.57 KB"><img src="/web/20070818031433im_/http://www.iom.edu/Layouts/iom_may_2005/Images/icons/icon_floppydisk_small.gif" width="12" height="12" border="0"/> Annotated Bibliography </a> </td> </tr> </table> </td> </tr> </table> </td> <td width="16" nowrap><br/></td> </tr> <!-- ### Child Lists Moved to Individual Section/Content pages--> <tr> <td width="18" nowrap></td> <td> <!-- Declarations --> <table width="100%" 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