1921 lines
52 KiB
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1921 lines
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|
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|
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<a class="gtm-topnav nav-link ext" href="https://participant.joinallofus.org/ParticipantPortal/s/login/?language=en" rel="noopener nofollow noreferrer">
|
||
Log In
|
||
</a>
|
||
</li>
|
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</ul>
|
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|
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|
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|
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<a href="https://participant.joinallofus.org/ParticipantPortal/s/login/SelfRegister?language=en" target="_blank" class="btn btn-sub">
|
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Join Now
|
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</a>
|
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<div data-drupal-messages-fallback class="hidden"></div>
|
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<main class="group" role="main">
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<ol id="breadcrumb" class="aou-breadcrumb breadcrumb">
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<li class="breadcrumb-item">
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<a href="/">All of Us</a>
|
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</li>
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<li class="breadcrumb-item">
|
||
<a href="/about">About</a>
|
||
</li>
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|
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<a href="/about/who-we-are">Who We Are</a>
|
||
</li>
|
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<li class="breadcrumb-item active is-active" aria-current="page"><em class="aou-text px-1">All of Us</em> Research Program Governance</li>
|
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|
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<div class="col">
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<h1 class="page-title">All of Us Research Program Governance</h1>
|
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<h2>Background</h2>
|
||
<p>In establishing its governance structure, the<em> All of Us</em> Research Program has adopted the recommendations provided in the <a href="https://www.nih.gov/sites/default/files/research-training/initiatives/pmi/pmi-working-group-report-20150917-2.pdf">final report of the NIH Advisory Committee to the Director (ACD) Working Group</a>. In implementing that governance, we are mindful of the program’s mission—including ensuring participant inclusion at all levels—and that our governance leadership and membership is diverse in expertise, institution, demographics, and experience.</p>
|
||
<p><em>All of Us</em> is led by a <strong>chief executive officer </strong>(CEO) with the expertise and authority to provide strong, credible, and effective leadership. A <strong>Steering Committee</strong> consisting of principal investigators from all awardee institutions, NIH senior staff, and <em>All of Us </em><a href="/about/who-we-are/all-us-participant-partners">participant ambassadors</a> provides a forum for members to discuss program strategies and long-term goals. In addition, a smaller <strong>Executive Committee</strong>, composed of a subset of Steering Committee members and select members of the consortium, meets with the CEO as needed to identify solutions to challenges and obstacles.</p>
|
||
<p>To improve efficiency, smaller groups oversee various areas of the <em>All of Us </em>Research Program. There are two types of these subordinate groups:</p>
|
||
<ul>
|
||
<li><strong>Committees</strong> are deliberative groups that address specific challenges and coordinate the development of specific areas of the program’s operations.</li>
|
||
<li><strong>Boards </strong>are standing groups that are responsible for managing defined, recurring tasks.</li>
|
||
</ul>
|
||
<p>The flexibility of this system has allowed the details to evolve, with subordinate committees forming and sunsetting to meet the needs of the program at any given time. The current components of the<em> All of Us </em>governance are described below.</p>
|
||
<p> </p>
|
||
<div style="caret-color: rgb(0, 0, 0); color: rgb(0, 0, 0); font-style: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: auto; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: auto; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration: none;">
|
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|
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<div class="msocomtxt" id="_com_1" language="JavaScript">
|
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<p class="MsoCommentText" style="margin: 0in 0in 6pt; font-size: 10pt; font-family: Calibri, sans-serif;"><o:p></o:p></p>
|
||
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|
||
</div>
|
||
</div>
|
||
<p><img alt="An organizational chart of the governance structure of the AoU Research Program. All committees and board report to the Steering and Executive Committees. The org chart displays three committees on the first tier below the Steering and Executive Committees: Access, Privacy, and Security; Participant Provided Information; and Science. On the next tier down are five boards: Participant Evaluation and Assessment, Resource Access, Consortium Training, Publications, and Incident Notifications." class="d-none d-md-block img-fluid" height="260" src="/sites/default/files/23-0134%20All%20of%20Us%20Governance%20chart_974x260px_dev10-2.png" width="974" loading="lazy"> <img alt="An organizational chart of the governance structure of the AoUs Research Program. All committees and board report to the Steering and Executive Committees. The org chart displays three committees on the first tier below the Steering and Executive Committees: Access, Privacy, and Security; Participant Provided Information; and Science. On the next tier down are five boards: Participant Evaluation and Assessment, Resource Access, Consortium Training, Publications, and Incident Notifications." class="d-md-none img-fluid" src="/sites/default/files/23-0134%20All%20of%20Us%20Governance%20chart_mobile_499x420px_dev4.png"></p>
|
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|
||
<div class="p-0 container">
|
||
<header id="Governance-Groups:-Leadership-and-Goals" class="no-gutters col-12">
|
||
<h2 class="section-title">Governance Groups: Leadership and Goals</h2>
|
||
|
||
</header>
|
||
<div class="pattern">
|
||
|
||
|
||
<div id="accordion_1821" class="card-body accordion-panel">
|
||
|
||
<div class="container-collapse-toggle text-center ">
|
||
<button class="btn btn-primary container-button-toggleAll gtm-accordion-open-all open" type="button" data-allclosed="true" data-target=".multi-collapse" aria-expanded="false" aria-label="open all">
|
||
<span class="button-toggle-label gtm-accordion-all">
|
||
<span class="button-toggle-sign"></span>
|
||
</span>
|
||
</button>
|
||
</div>
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
<div class="card feed " >
|
||
|
||
<button id="heading-1" class="btn btn-link button-expand-link gtm-accordion-close" data-toggle="collapse" data-target="#collapse-1821-1" aria-expanded="false" aria-controls="collapse-1821-1">
|
||
|
||
The Steering Committee
|
||
|
||
|
||
<span class="button-toggle-label gtm-accordion-link" aria-label="Toggle accordion button">
|
||
<span class="button-toggle-sign" aria-label="Toggle accordion button"></span>
|
||
</span>
|
||
|
||
|
||
</button>
|
||
|
||
|
||
|
||
<div id="collapse-1821-1" class="collapse multi-collapse " aria-labelledby="heading-1">
|
||
<div class="card-body">
|
||
|
||
</div>
|
||
|
||
<div class="card-body">
|
||
|
||
<p><strong>Goals</strong></p>
|
||
<ul>
|
||
<li>Oversee planning, coordination, and implementation of the program’s overall operations.</li>
|
||
<li>Provide input regarding strategic directions for the <em>All of Us</em> Research Program.</li>
|
||
</ul>
|
||
<p><strong>Co-Chairs</strong></p>
|
||
<ul>
|
||
<li>Stephanie Devaney</li>
|
||
<li>Paul Harris</li>
|
||
</ul>
|
||
|
||
|
||
</div>
|
||
|
||
|
||
|
||
</div>
|
||
|
||
|
||
|
||
</div>
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
<div class="card feed " >
|
||
|
||
<button id="heading-2" class="btn btn-link button-expand-link gtm-accordion-close" data-toggle="collapse" data-target="#collapse-1821-2" aria-expanded="false" aria-controls="collapse-1821-2">
|
||
|
||
The Executive Committee
|
||
|
||
|
||
<span class="button-toggle-label gtm-accordion-link" aria-label="Toggle accordion button">
|
||
<span class="button-toggle-sign" aria-label="Toggle accordion button"></span>
|
||
</span>
|
||
|
||
|
||
</button>
|
||
|
||
|
||
|
||
<div id="collapse-1821-2" class="collapse multi-collapse " aria-labelledby="heading-2">
|
||
<div class="card-body">
|
||
|
||
</div>
|
||
|
||
<div class="card-body">
|
||
|
||
<p><strong>Goals</strong></p>
|
||
<ul>
|
||
<li>Ensure that the program effectively meets its objectives and mission.</li>
|
||
<li>Propose solutions to challenges and obstacles.</li>
|
||
<li>Providing the CEO of <em>All of Us</em> with strategies, options, and information to help make final programmatic decisions.</li>
|
||
</ul>
|
||
<p><strong>Co-Chairs</strong></p>
|
||
<ul>
|
||
<li>Josh Denny</li>
|
||
<li>Paul Harris</li>
|
||
</ul>
|
||
|
||
|
||
</div>
|
||
|
||
|
||
|
||
</div>
|
||
|
||
|
||
|
||
</div>
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
<div class="card feed " >
|
||
|
||
<button id="heading-3" class="btn btn-link button-expand-link gtm-accordion-close" data-toggle="collapse" data-target="#collapse-1821-3" aria-expanded="false" aria-controls="collapse-1821-3">
|
||
|
||
The Committee on Access, Privacy, and Security (CAPS)
|
||
|
||
|
||
<span class="button-toggle-label gtm-accordion-link" aria-label="Toggle accordion button">
|
||
<span class="button-toggle-sign" aria-label="Toggle accordion button"></span>
|
||
</span>
|
||
|
||
|
||
</button>
|
||
|
||
|
||
|
||
<div id="collapse-1821-3" class="collapse multi-collapse " aria-labelledby="heading-3">
|
||
<div class="card-body">
|
||
|
||
</div>
|
||
|
||
<div class="card-body">
|
||
|
||
<p><strong>Goals</strong></p>
|
||
<ul>
|
||
<li>Extend <em>All of Us' </em>core values of protecting participant privacy, securing participant data, and building trust to the establishment and maintenance of the program’s scientific resources.</li>
|
||
<li>Guarantee researchers’ access to the resources in a way that is educational, rewarding, responsible, and scientifically useful.</li>
|
||
</ul>
|
||
<p><strong>Co-Chairs</strong></p>
|
||
<ul>
|
||
<li>Rosario Isasi</li>
|
||
<li>Brad Malin</li>
|
||
</ul>
|
||
|
||
|
||
</div>
|
||
|
||
|
||
|
||
</div>
|
||
|
||
|
||
|
||
</div>
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
<div class="card feed " >
|
||
|
||
<button id="heading-4" class="btn btn-link button-expand-link gtm-accordion-close" data-toggle="collapse" data-target="#collapse-1821-4" aria-expanded="false" aria-controls="collapse-1821-4">
|
||
|
||
The Participant-Provided Information (PPI) Committee
|
||
|
||
|
||
<span class="button-toggle-label gtm-accordion-link" aria-label="Toggle accordion button">
|
||
<span class="button-toggle-sign" aria-label="Toggle accordion button"></span>
|
||
</span>
|
||
|
||
|
||
</button>
|
||
|
||
|
||
|
||
<div id="collapse-1821-4" class="collapse multi-collapse " aria-labelledby="heading-4">
|
||
<div class="card-body">
|
||
|
||
</div>
|
||
|
||
<div class="card-body">
|
||
|
||
<p>Participant Provided Information (PPI) comprises a broad range of appropriate health-relevant information, collected using modern digital technology techniques, including surveys, patient-reported outcomes, diaries/logs, and other self-reported approaches.</p>
|
||
<p><strong> Goals</strong></p>
|
||
<ul>
|
||
<li>Promotes long-term engagement with participants.</li>
|
||
<li>Provides scientific value and produces new knowledge, with the goal of enabling researchers to discover and develop more effective ways to prolong health and treat disease.</li>
|
||
</ul>
|
||
<p><strong>Co-Chairs</strong></p>
|
||
<ul>
|
||
<li>Brian Ahmedani</li>
|
||
<li>Rob Cronin</li>
|
||
</ul>
|
||
|
||
|
||
</div>
|
||
|
||
|
||
|
||
</div>
|
||
|
||
|
||
|
||
</div>
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
|
||
<div class="card feed " >
|
||
|
||
<button id="heading-5" class="btn btn-link button-expand-link gtm-accordion-close" data-toggle="collapse" data-target="#collapse-1821-5" aria-expanded="false" aria-controls="collapse-1821-5">
|
||
|
||
The Science Committee
|
||
|
||
|
||
<span class="button-toggle-label gtm-accordion-link" aria-label="Toggle accordion button">
|
||
<span class="button-toggle-sign" aria-label="Toggle accordion button"></span>
|
||
</span>
|
||
|
||
|
||
</button>
|
||
|
||
|
||
|
||
<div id="collapse-1821-5" class="collapse multi-collapse " aria-labelledby="heading-5">
|
||
<div class="card-body">
|
||
|
||
</div>
|
||
|
||
<div class="card-body">
|
||
|
||
<p><strong>Goals</strong></p>
|
||
<ul>
|
||
<li>Articulate the scientific goals that inform the development of the <em>All of Us</em> platform and any pilot studies pursued within the program, including the data that participants are asked to share.</li>
|
||
<li>Ensure that <em>All of Us</em> creates a resource that enables and anticipates broad, decades-long scientific exploration.</li>
|
||
</ul>
|
||
<p><strong>Co-Chairs</strong></p>
|
||
<ul>
|
||
<li>Hoda Anton-Culver </li>
|
||
<li>Dan Roden</li>
|
||
</ul>
|
||
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<div class="card feed " >
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The Participant Evaluation and Assessment Board
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<div class="card-body">
|
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|
||
<p><strong>Goals</strong></p>
|
||
<ul>
|
||
<li>Implement and oversee aspects of the participant experience that leverage participant evaluation and assessment mechanisms.</li>
|
||
<li>Curate, coordinate, review, and direct the systems and methods used to implement, track, and analyze the data relating to participants’ and potential participants’ interactions with the program.</li>
|
||
<li>Provide input and a range of relevant subject matter expertise to <em>All of Us</em> regarding the development of new surveys, questionnaires, tools, or other feedback mechanisms to understand and enhance the participant journey.</li>
|
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</ul>
|
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<p><strong>Co-Chairs</strong></p>
|
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<ul>
|
||
<li>Mercedita Roxas-Murray</li>
|
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</ul>
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</div>
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The Resource Access Board
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<div class="card-body">
|
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|
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<p><strong>Goals</strong></p>
|
||
<ul>
|
||
<li>Implement resource access policies for <em>All of Us,</em> as developed by CAPS and consistent with the Data Access Framework.</li>
|
||
</ul>
|
||
<p><strong>Co-Chairs</strong></p>
|
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<ul>
|
||
<li>Stephen Sodeke</li>
|
||
<li>Harvey Murff</li>
|
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</ul>
|
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|
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|
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Consortium Training Board
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<div class="card-body">
|
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|
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<p><strong>Goals</strong></p>
|
||
<ul>
|
||
<li>Implement and oversee internal <em>All of Us</em> Consortium Training Resources. </li>
|
||
<li>Assess the training needs of <em>All of Us</em> Consortium members and ensure that appropriate training content is developed, deployed, and maintained to meet those needs.</li>
|
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</ul>
|
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<p><strong>Chair</strong></p>
|
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<ul>
|
||
<li>Hannah Sinemus</li>
|
||
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|
||
|
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The Publications Board
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<div class="card-body">
|
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<p><strong>Goals</strong></p>
|
||
<ul>
|
||
<li>Implement and maintain the consortium's rules governing manuscripts that report the development, management, and operations of <em>All of Us</em>.</li>
|
||
<li>Address questions or concerns with project concepts, authorship disputes, and other outstanding issues.</li>
|
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</ul>
|
||
<p><strong>Co-Chairs</strong></p>
|
||
<ul>
|
||
<li>Brandy Mapes</li>
|
||
<li>Elizabeth Cohn</li>
|
||
</ul>
|
||
|
||
|
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</div>
|
||
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|
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|
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The Incident Notifications Board
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<div class="card-body">
|
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|
||
<p><strong>Goals</strong></p>
|
||
<ul>
|
||
<li>Implement the <em>All of Us</em> “Participant Data Protections and Incident Notifications” plan.</li>
|
||
<li>Provide input on ways to enhance participant privacy protections and data security processes.</li>
|
||
<li>Evaluate incident reports and implement notification processes should a privacy incident occur.</li>
|
||
</ul>
|
||
<p><strong>Co-Chairs</strong></p>
|
||
<ul>
|
||
<li>Sonya Jooma</li>
|
||
<li>Elizabeth Cohn</li>
|
||
</ul>
|
||
|
||
|
||
</div>
|
||
|
||
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||
|
||
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|
||
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|
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<span>
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<strong>Last Reviewed:
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</strong>
|
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February 19, 2025</span>
|
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<ul>
|
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<li><a href="https://www.nih.gov/sites/default/files/research-training/initiatives/pmi/pmi-working-group-report-20150917-2.pdf">Precision Medicine Initiative Working Group Final Report.</a></li>
|
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<li><a href="https://www.nejm.org/doi/full/10.1056/NEJMsr1809937">NEJM Special Report: The <em>All of Us</em> Research Program</a></li>
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<li><a href="/about/diversity-and-inclusion/all-us-tribal-engagement"><em>All of Us</em> Tribal Engagement</a></li>
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