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<p>Understanding Patient Data was set up in late 2016, for the purpose of developing tools and resources to improve conversations about how health information is and can be used. We think that responsible use of patient data has the
potential to do great things to improve health and care, but that transparency, accountability and respect for confidentiality are vitally important for data use to be justifiable.</p>
<p>You can read about our funding, support, governance and our aims on this page, or contact us for more information. Understanding Patient Data is led by a small core team, based at the Wellcome Trust offices in London, UK and was
set up to run for two years.</p>
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<section>
<h2 id="content-aims-and-objectives">Aims and objectives</h2>
<p>We aim to support discussions with the public, patients and healthcare professionals about uses of health and care data by:</p>
<div class="column">
<ol>
<li>
providing objective evidence about:
<ul>
<li>how and why data can be used for care and research</li>
<li>the benefits and risks</li>
<li>what is allowed and not allowed</li>
<li>how personal information is safeguarded</li>
</ul>
</li>
<li>helping people make informed decisions when they have options about how data might be used</li>
<li>developing advocates who can champion the responsible use of data</li>
<li>bringing together other engagement initiatives to strengthen the voice of individual activities</li>
<li>working with the media to present an even-handed portrayal of stories relating to health data</li>
<li>providing analysis about public attitudes to help inform NHS England, Department of Health and NHS Digital policy and communications</li>
<li>examining emerging issues from new data-driven technologies and the implications for public confidence.</li>
</ol>
</div>
</section>
<section>
<h2 id="content-meet-the-team">Meet the team</h2>
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<img alt="" class="team-tile__image" src="../../images/placeholder/team-tile-nicola.jpg">
<span class="team-tile__name">Nicola Perrin</span>
<span class="team-tile__title">Head of Understanding Patient Data</span>
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<img alt="" class="team-tile__image" src="../../images/placeholder/team-tile-nicola.jpg">
<span class="team-tile__name">Nicola Perrin</span>
<span class="team-tile__title">Head of Understanding Patient Data</span>
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<span class="team-tile__name">Nicola Perrin</span>
<span class="team-tile__title">Head of Understanding Patient Data</span>
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<img alt="" class="team-tile__image" src="../../images/placeholder/team-tile-nicola.jpg">
<span class="team-tile__name">Nicola Perrin</span>
<span class="team-tile__title">Head of Understanding Patient Data</span>
<a href="#link-to-twitter-account">
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<img alt="" class="team-tile__image" src="../../images/placeholder/team-tile-nicola.jpg">
<span class="team-tile__name">Nicola Perrin</span>
<span class="team-tile__title">Head of Understanding Patient Data</span>
<a href="#link-to-twitter-account">
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<span class="team-tile__name">Nicola Perrin</span>
<span class="team-tile__title">Head of Understanding Patient Data</span>
<a href="#link-to-twitter-account">
<svg class="svg-icon svg-icon--circular team-tile__icon" xmlns="http://www.w3.org/2000/svg" title="Twitter">
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<section>
<h2 id="content-governance">Governance</h2>
<p>A Steering Committee helps provide strategic direction and oversight for our work. Members of the Steering Committee are:</p>
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<img alt="" class="profile__image" src="../../images/placeholder/profile-lorraine.jpg">
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<span class="profile__name">Lorraine Jackson</span>
<span class="profile__title">Department of Health</span>
</div>
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<!-- /li -->
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<img alt="" class="profile__image" src="../../images/placeholder/profile-lorraine.jpg">
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<span class="profile__name">Lorraine Jackson</span>
<span class="profile__title">Department of Health</span>
</div>
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<!-- /li -->
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<span class="profile__name">Lorraine Jackson</span>
<span class="profile__title">Department of Health</span>
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<span class="profile__name">Lorraine Jackson</span>
<span class="profile__title">Department of Health</span>
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<span class="profile__name">Lorraine Jackson</span>
<span class="profile__title">Department of Health</span>
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<span class="profile__name">Lorraine Jackson</span>
<span class="profile__title">Department of Health</span>
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<div class="box box--highlight box--large">
<p>We are also supported by an advisory group representing a wide range of stakeholders to provide a broader perspective to our work across different audiences.</p>
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<li class="column__group u-pb-line-height">
<div class="profile">
<span class="profile__name">Paul Baverstock</span>
<span class="profile__title">Director, Paperless 2020 Communications, NHS Digital</span>
</div>
</li>
<li class="column__group u-pb-line-height">
<div class="profile">
<span class="profile__name">Aisling Burnand</span>
<span class="profile__title">Chief Executive, AMRC</span>
</div>
</li>
<li class="column__group u-pb-line-height">
<div class="profile">
<span class="profile__name">Chris Carrigan</span>
<span class="profile__title">UseMYdata and Chair, IGARD</span>
</div>
</li>
<li class="column__group u-pb-line-height">
<div class="profile">
<span class="profile__name">Simon Denegri</span>
<span class="profile__title">Chair of INVOLVE and National Director for Public Participation and Engagement in Research, NIHR</span>
</div>
</li>
<li class="column__group u-pb-line-height">
<div class="profile">
<span class="profile__name">Professor Carol Dezateux</span>
<span class="profile__title">Professor of Paediatric Epidemiology, UCL Institute of Child Health (on behalf of Academy of Medical Sciences)</span>
</div>
</li>
<li class="column__group u-pb-line-height">
<div class="profile">
<span class="profile__name">Fiona Fox</span>
<span class="profile__title">Director, Science Media Centre</span>
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</li>
<li class="column__group u-pb-line-height">
<div class="profile">
<span class="profile__name">Mark Golledge</span>
<span class="profile__title">Programme Manager – Health and Care Informatics, Local Government Association</span>
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</li>
<li class="column__group u-pb-line-height">
<div class="profile">
<span class="profile__name">John Cavell</span>
<span class="profile__title">Director, National Data Guardian Panel</span>
</div>
</li>
<li class="column__group u-pb-line-height">
<div class="profile">
<span class="profile__name">Cynthia Joyce</span>
<span class="profile__title">Director, MQ</span>
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</li>
<li class="column__group u-pb-line-height">
<div class="profile">
<span class="profile__name">Peter Knight</span>
<span class="profile__title">Chief Information and Digital Officer, Oxford University Hospitals</span>
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<li class="column__group u-pb-line-height">
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<span class="profile__name">Prof Nigel Mathers</span>
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</li>
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<span class="profile__name">Rachel Merrett</span>
<span class="profile__title">Deputy Head of Data Policy, NHS England</span>
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</li>
<li class="column__group u-pb-line-height">
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<span class="profile__name">Andrew Morris</span>
<span class="profile__title">Farr Institute</span>
</div>
</li>
<li class="column__group u-pb-line-height">
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<span class="profile__name">Viv Parry</span>
<span class="profile__title">Genomics England</span>
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</li>
<li class="column__group u-pb-line-height">
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<span class="profile__name">Martin Severs</span>
<span class="profile__title">Medical Director and Caldicott Guardian, NHS Digital</span>
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</li>
<li class="column__group u-pb-line-height">
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<span class="profile__name">Jeremy Taylor</span>
<span class="profile__title">Chief Executive, National Voices</span>
</div>
</li>
<li class="column__group u-pb-line-height">
<div class="profile">
<span class="profile__name">Mark Taylor</span>
<span class="profile__title">Chair, Confidentiality Advisory Group</span>
</div>
</li>
<li class="column__group u-pb-line-height">
<div class="profile">
<span class="profile__name">Lynda Thomas</span>
<span class="profile__title">Chief Executive, Macmillan [or another Richmond Group member]</span>
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</li>
<li class="column__group u-pb-line-height">
<div class="profile">
<span class="profile__name">Karin Woodley</span>
<span class="profile__title">Chief Executive, Cambridge House (on behalf of ESRC)</span>
</div>
</li>
<li class="column__group u-pb-line-height">
<div class="profile">
<span class="profile__name">Shahid Hanif, ABPI, or Jane Juniper</span>
<span class="profile__title">Pharmonyze</span>
</div>
</li>
<li class="column__group u-pb-line-height">
<div class="profile">
<span class="profile__name">MRC and ESRC representatives</span>
<span class="profile__title">(TBC)</span>
</div>
</li>
</ul>
</div>
</div>
</section>
<section>
<h2 id="content-funding">Funding</h2>
<p>The following organisations provide funding support for Understanding Patient Data:</p>
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</ul>
<p>Medical Research Council, Economic and Social Research Council, Department of Health/National Institute of Health Research, Public Health England and Wellcome Trust.</p>
<p>Our views and outputs are independent of Government and the other funders. Understanding Patient Data has the backing of the UK Clinical Research Collaboration Board.
</p>
</section>
<section>
<h2 id="content-supporters">Supporters</h2>
<p>These organisations support the work of Understanding Patient Data, sharing information and engaging with their membership to help develop the team’s ideas and resources.</p>
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