tag:blogger.com,1999:blog-56882961400024604592024-03-18T21:14:31.621-07:00Biomedical Research Insideremail us at Bioinformaticsolutions @ gmail . comBioinformatic5http://www.blogger.com/profile/05450325528399173016noreply@blogger.comBlogger111125tag:blogger.com,1999:blog-5688296140002460459.post-15328538377611058532013-02-08T04:56:00.001-08:002013-02-08T05:01:25.844-08:00Recent Examples of Infrastructure (Databases and Analytics) Engagements in Healthcare (IBM, Truven, Oracle, ATG)<div class="MsoNormal" style="line-height: 19.2pt; margin-bottom: 8.35pt;">
<span style="color: #333333; font-family: "Helvetica","sans-serif"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">For those of
you who enjoyed our reports on informatics platform development in the UK (use
the search feature on the blog to look for posts referencing 'NOCRI'), we're
going to be focusing again on enterprise platforms which support service
delivery and research with a global lens in the coming months. To whet your
appetite for upcoming posts here's a selection of projects we've come across in
the last week:<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "Helvetica","sans-serif"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;"> </span><span style="color: #333333; font-family: Helvetica, sans-serif; line-height: 19.2pt;">From </span><a href="http://www.healthdatamanagement.com/news/data-analytics-hie-state-health-information-exchange-45665-1.html?ET=healthdatamanagement:e3246:148063a:&st=email&utm_source=editorial&utm_medium=email&utm_campaign=HDM_Daily_020713" style="font-family: Helvetica, sans-serif; line-height: 19.2pt;"><span style="color: #0089d0;">HealthDataManagement.com</span></a><span style="color: #333333; font-family: Helvetica, sans-serif; line-height: 19.2pt;">: </span><b style="color: #333333; font-family: Helvetica, sans-serif; line-height: 19.2pt;">Truven
Health Analytics has introduced a new suite of products for statewide health
information exchanges, called HIE Advantage Analytics</b></div>
<div class="MsoNormal" style="line-height: 19.2pt; margin-bottom: 8.35pt;">
<span style="color: #333333; font-family: "Arial","sans-serif"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">The suite is
designed to enable public health officials to access and analyze operational
and clinical statistical data in a state’s HIE. The West Virginia Health
Information Network is an early adopter.</span><span style="color: #333333; font-family: "Helvetica","sans-serif"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;"><o:p></o:p></span></div>
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<span style="color: #333333; font-family: "Arial","sans-serif"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">HIE Advantage
uses near real-time clinical data from providers, claims data from the Centers
for Medicare and Medicaid Services, and data from other sources that are stored
in state HIE repositories. The goal is to monitor community health status while
improving outcomes, according to Truven Health, previously the health care
business of Thomson Reuters.<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "Arial","sans-serif"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Reports
analyze prevalence, process of care and outcome metrics for specific diseases,
as well as rates of screening and preventive care to identify communities at
higher risk for poor health status. More information is <a href="http://www.truvenhealth.com/products/hie_advantage_analytics.aspx"><span style="color: #b20838;">available here</span></a>.<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "Helvetica","sans-serif"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">From <a href="http://news.investors.com/newsfeed-marketwire/013113-141429758-the-university-of-texas-md-anderson-cancer-center-selects-oracle-applications-and-technology-as-part-of-platform-to-help-transform-cancer-care.aspx#comments"><span style="color: #0089d0;">Investors.com</span></a>: <b>The University of Texas
MD Anderson Cancer Center Selects Oracle Applications and Technology as Part of
Platform to Help Transform Cancer Care</b><o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="color: #333333; font-family: Symbol; mso-ansi-language: EN-GB; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol; mso-fareast-language: EN-GB;">·<span style="font-family: 'Times New Roman'; font-size: 7pt; line-height: normal;">
</span></span><!--[endif]--><span style="color: #333333; font-family: "Arial","sans-serif"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;"><a href="http://ctt.marketwire.com/?release=980454&id=2552761&type=1&url=http%3a%2f%2fwww.mdanderson.org%2f"><span style="color: #003399;">MD Anderson</span></a>, one of the world's most respected
centers devoted exclusively to cancer patient care, research, education and
prevention, has selected <a href="http://ctt.marketwire.com/?release=980454&id=2552764&type=1&url=http%3a%2f%2fwww.oracle.com%2fus%2findustries%2fhealth-sciences%2findex.htm"><span style="color: #003399;">Oracle Health Sciences</span></a> applications
and <a href="http://ctt.marketwire.com/?release=980454&id=2552767&type=1&url=http%3a%2f%2fwww.oracle.com%2findex.html"><span style="color: #003399;">Oracle</span></a> technology as the foundation for
an organization-wide analytics initiative designed to enable a new generation
of personalized cancer treatment that improves outcomes. The platform will also
support the center's renowned <a href="http://ctt.marketwire.com/?release=980454&id=2552770&type=1&url=http%3a%2f%2fwww.cancermoonshots.org%2f"><span style="color: #003399;">Moon Shots Program</span></a>, an unprecedented effort to
dramatically accelerate the pace of converting scientific discoveries into
clinical advances that reduce cancer deaths.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 19.2pt; margin-bottom: .0001pt; margin: 0cm; mso-list: l0 level1 lfo1; tab-stops: list 36.0pt; text-indent: -18.0pt;">
<!--[if !supportLists]--><span style="color: #333333; font-family: Symbol; mso-ansi-language: EN-GB; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol; mso-fareast-language: EN-GB;">·<span style="font-family: 'Times New Roman'; font-size: 7pt; line-height: normal;">
</span></span><!--[endif]--><span style="color: #333333; font-family: "Arial","sans-serif"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Oracle applications and technology will power the
enterprise analytics initiative, one of the program's platforms. The new
platform will bring together clinical, genomic, financial, administrative and
operational information from internal and external sources to yield insights
that drive care innovation and optimize operational efficiency.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 19.2pt; margin-bottom: .0001pt; margin: 0cm; mso-list: l0 level1 lfo1; tab-stops: list 36.0pt; text-indent: -18.0pt;">
<!--[if !supportLists]--><span style="color: #333333; font-family: Symbol; mso-ansi-language: EN-GB; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol; mso-fareast-language: EN-GB;">·<span style="font-family: 'Times New Roman'; font-size: 7pt; line-height: normal;">
</span></span><!--[endif]--><span style="color: #333333; font-family: "Arial","sans-serif"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">To achieve its goals, the center, ranked first for
cancer care in <i>U.S. News & World Report's</i> "Best
Hospitals" survey for seven of the last nine years, will deploy a wide range
of Oracle solutions, including <a href="http://ctt.marketwire.com/?release=980454&id=2552773&type=1&url=http%3a%2f%2fwww.oracle.com%2fus%2findustries%2fhealthcare%2f058441.html"><span style="color: #003399;">Oracle Enterprise Healthcare Analytics</span></a> and
Oracle Translational Research Center<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 19.2pt; margin-bottom: .0001pt; margin: 0cm; mso-list: l0 level1 lfo1; tab-stops: list 36.0pt; text-indent: -18.0pt;">
<!--[if !supportLists]--><span style="color: #333333; font-family: Symbol; mso-ansi-language: EN-GB; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol; mso-fareast-language: EN-GB;">·<span style="font-family: 'Times New Roman'; font-size: 7pt; line-height: normal;">
</span></span><!--[endif]--><span style="color: #333333; font-family: "Arial","sans-serif"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">MD Anderson, which sees data growth of 30 percent
to 40 percent annually, is also deploying <a href="http://ctt.marketwire.com/?release=980454&id=2552776&type=1&url=http%3a%2f%2fwww.oracle.com%2fus%2fproducts%2fdatabase%2foverview%2findex.html"><span style="color: #003399;">Oracle Database</span></a> and <a href="http://ctt.marketwire.com/?release=980454&id=2552779&type=1&url=http%3a%2f%2fwww.oracle.com%2fus%2fsolutions%2fbusiness-analytics%2fbusiness-intelligence%2fenterprise-edition%2foverview%2findex.html"><span style="color: #003399;">Oracle Business Intelligence Enterprise Edition</span></a>.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 19.2pt; margin-bottom: .0001pt; margin: 0cm; mso-list: l0 level1 lfo1; tab-stops: list 36.0pt; text-indent: -18.0pt;">
<span style="color: #333333; font-family: "Arial","sans-serif"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;"><br /></span></div>
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<span style="color: #333333; font-family: "Helvetica","sans-serif"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">From <a href="http://blog.executivebiz.com/2013/02/ibm-to-provide-intl-medical-research-facility-with-it-infrastructure-data-processing-support/"><span style="color: #0089d0;">Executive Biz</span></a><b> IBM to Provide Int’l
Medical Research Facility with IT Infrastructure, Application Support</b><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 19.2pt; margin-bottom: 8.35pt;">
<b><span style="color: #333333; font-family: "Arial","sans-serif"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">IBM</span></b><span style="color: #333333; font-family: "Arial","sans-serif"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;"> and the
Dmitry Rogachev Clinical Center have entered into a contract of agreement to
deploy PureFlex integrated systems in the Clinic’s facilities to bolster IT
support, according to an </span><span style="color: #333333; font-family: "Helvetica","sans-serif"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;"><a href="http://www-03.ibm.com/press/us/en/pressrelease/40254.wss"><span style="color: #326693; font-family: "Arial","sans-serif";">IBM statement</span></a></span><span style="color: #333333; font-family: "Arial","sans-serif"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">.</span><span style="color: #333333; font-family: "Helvetica","sans-serif"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;"><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 15.9pt;">
<span style="color: #333333; font-family: "Arial","sans-serif"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">“By 2015, we expect to increase the volume of
clinical tests five times and to be able to cover 5,000 primary patients
generating over a petabyte of medical data,” said <u>Igor Pyatnitsa</u>,
head of operations at the Russian Federal Scientific-Clinical Center of
Pediatric Hematology, Oncology and Immunology.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 15.9pt;">
<span style="color: #333333; font-family: "Arial","sans-serif"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">“This is valuable data which we must effectively
store and manage for medical and legal reasons. IBM’s PureFlex systems help us
to do this effectively while controlling costs and ensuring the highest levels
of data security,” he added.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 15.9pt;">
<span style="color: #333333; font-family: "Arial","sans-serif"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">The agreement is an extension of an existing
contract for the IBM PureSystems roll out.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 15.9pt;">
<span style="color: #333333; font-family: "Arial","sans-serif"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">The center focuses on finding treatment for blood
disorders, cancer, immune system diseases, and other diseases. It is a part of
the Russian Ministry of Health and a chief collaborator on more than 400
projects, 100 clinical trials and 20,000 medical tests per year.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 15.9pt;">
<span style="color: #333333; font-family: "Arial","sans-serif"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">This will be the first time PureFlex will be used
in Russia. PureFlex technology will assist the center with installing fast
systems and critical medical applications.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 15.9pt;">
<span style="color: #333333; font-family: "Arial","sans-serif"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">It will also help in organizing their extensive
medical data repository through an automatic locator using existing
applications. The hospital hopes that this will lead to better collaboration
and field research.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 15.9pt;">
<u><span style="color: #333333; font-family: "Arial","sans-serif"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Andrey Filatov</span></u><span style="color: #333333; font-family: "Arial","sans-serif"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">, Director, IBM Systems and
Technology Group for IBM in Russia and the CIS said the PureFlex Systems is
meant to provide a platform for Russian healthcare and medical research
development.<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "Arial","sans-serif"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">The offering is tuned for cloud computing and can
consolidate more than 100 databases on a single system and helps to rapidly
deploy medical applications.</span></div>
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<span style="color: #333333; font-family: "Helvetica","sans-serif"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;"><br /></span></div>
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<span style="color: #333333; font-family: "Arial","sans-serif"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;"><o:p></o:p></span><span style="color: #333333; font-family: "Helvetica","sans-serif"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">From <a href="http://blog.executivebiz.com/2013/02/allied-technology-designing-analyzing-army-medical-research-projects/"><span style="color: #0089d0;">Executive Biz</span></a>: <b>Allied Technology
Designing, Analyzing Army Medical Research Projects [Databases, Analytics]</b><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 15.9pt;">
<span style="color: #333333; font-family: "Arial","sans-serif"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Maryland-based information technology and
engineering provider <a href="http://www.alliedtech.com/"><b><span style="color: #326693;">Allied Technology Group</span></b></a> has won a
five-year contract to help a <u>U.S. Army</u> medical research
facility in Silver Spring design, analyze and report on projects.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 15.9pt;">
<span style="color: #333333; font-family: "Arial","sans-serif"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;"><a href="http://www.alliedtech.com/newsandevents.htm#wrair"><span style="color: #326693;">ATG says its</span></a> statisticians and public
health analysts work with the Walter Reed Army Institute of Research ("</span><span style="color: #333333; font-family: "Verdana","sans-serif"; font-size: 11.0pt; mso-ansi-language: EN-GB; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">the largest and most diverse biomedical research
laboratory in the Department of Defense")</span><span style="color: #333333; font-family: "Arial","sans-serif"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;"> to include and
exclude criteria, select study subjects, develop analytic databases and analyze
statistics.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 15.9pt;">
<span style="color: #333333; font-family: "Arial","sans-serif"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">The company will provide the institute a team of
epidemiologists, biostatisticians and administrative personnel for analysis,
collecting and entering data, managing databases and programming computers.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="color: #333333; font-family: "Arial","sans-serif"; mso-ansi-language: EN-GB; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Since 2007, ATG says staff members have authored and co-authored
articles for 30 peer-reviewed publications and 34 scientific presentations on
their work at the institute.</span><span lang="EN-US" style="font-family: "Verdana","sans-serif";"><o:p></o:p></span></div>
<ul class="page-info" style="color: #333333; float: right; font-family: 'helvetica neue', helvetica, arial, sans-serif; font-size: 0.95em; line-height: 1.75em; list-style: none; margin: 5px; padding: 0px;"></ul>
Bioinformatic5http://www.blogger.com/profile/05450325528399173016noreply@blogger.com0tag:blogger.com,1999:blog-5688296140002460459.post-12161188716516698262012-12-03T09:10:00.000-08:002012-12-03T14:48:15.427-08:00European data assets catalogue & eHealth Infrastructure - analyses of progressWe'll be looking at access to European patient-level data for research purposes over the next few months and have hit on a couple of online resources we thought worth sharing with you.<br />
<div>
<br /></div>
<div>
<i>The first</i> is a <a href="http://www.benjaminhughes.net/index.php?title=Health_data">listing of data assets by country</a> (and some international assets) with clear concise descriptions of their content.This is a great starting place for anyone looking to understand the large-scale datasets which might support various kinds of clinical, epidemiological and commercial research. The below is an excerpt, the entry for the Netherlands, to whet your appetite:</div>
<div>
<span style="background-color: white; color: #333333; font-family: 'Trebuchet MS', 'Lucida Grande', Verdana, Arial, sans-serif; font-size: 1.33em; line-height: 16.700000762939453px;"><br /></span></div>
<div>
<span style="background-color: white; color: #333333; font-family: 'Trebuchet MS', 'Lucida Grande', Verdana, Arial, sans-serif; font-size: 1.33em; line-height: 16.700000762939453px;">Netherlands</span></div>
<div style="background-color: white; color: #333333; font-family: 'Trebuchet MS', 'Lucida Grande', Verdana, Arial, sans-serif; font-size: 14px; line-height: 16.700000762939453px; margin-bottom: 1em; margin-top: 1em; unicode-bidi: embed;">
<i style="margin: 0px;">Health records</i></div>
<ul style="background-color: white; color: #333333; font-family: 'Trebuchet MS', 'Lucida Grande', Verdana, Arial, sans-serif; font-size: 14px; line-height: 16.700000762939453px; margin: 10px; padding-left: 15px; unicode-bidi: embed;">
<li style="margin: 0px 0px 0px 10px; unicode-bidi: embed;"><a class="external text" href="http://www.ipci.nl/" rel="nofollow" style="background-image: url(http://www.benjaminhughes.net/skins/kindofblue/external.png); background-position: 100% 50%; background-repeat: no-repeat no-repeat; color: #2153b0; margin: 0px; padding-right: 13px; text-decoration: initial;" title="http://www.ipci.nl">Integrated Primary Care Information (IPCI)</a> information from electronic patient records of 150 GPs covering more than 1 000 000 patients</li>
<li style="margin: 0px 0px 0px 10px; unicode-bidi: embed;"><a class="external text" href="http://www.pharmo.nl/" rel="nofollow" style="background-image: url(http://www.benjaminhughes.net/skins/kindofblue/external.png); background-position: 100% 50%; background-repeat: no-repeat no-repeat; color: #2153b0; margin: 0px; padding-right: 13px; text-decoration: initial;" title="http://www.pharmo.nl">Pharmo</a> Independent research organization for drug use and outcomes (including cardiovascular, metabolic disease, oncology and autoimmune disease, respiratory disease, and mother and child health). Overall it covers 2 million residents in the Netherlands and around 200 000 patients linked to GP patient records. Other data includes:<ul style="margin: 0px 10px; padding-left: 15px; unicode-bidi: embed;">
<li style="margin: 0px 0px 0px 10px; unicode-bidi: embed;">Community Pharmacy database (CPD)</li>
<li style="margin: 0px 0px 0px 10px; unicode-bidi: embed;">Clinical Laboratory File (CLF)</li>
<li style="margin: 0px 0px 0px 10px; unicode-bidi: embed;">General Practitioner database (GPD)</li>
<li style="margin: 0px 0px 0px 10px; unicode-bidi: embed;">Dutch Pathology Registers (PALGA)</li>
<li style="margin: 0px 0px 0px 10px; unicode-bidi: embed;">Hospital Pharmacy database (HPD)</li>
<li style="margin: 0px 0px 0px 10px; unicode-bidi: embed;">Dutch mortality statistics (CBG)</li>
<li style="margin: 0px 0px 0px 10px; unicode-bidi: embed;">National Dutch Hospital Registration (LMR)</li>
<li style="margin: 0px 0px 0px 10px; unicode-bidi: embed;">Perinatal Registry (PRN)</li>
<li style="margin: 0px 0px 0px 10px; unicode-bidi: embed;">Eindhoven Cancer registration (IKZ)</li>
</ul>
</li>
</ul>
<div style="background-color: white; color: #333333; font-family: 'Trebuchet MS', 'Lucida Grande', Verdana, Arial, sans-serif; font-size: 14px; line-height: 16.700000762939453px; margin-bottom: 1em; margin-top: 1em; unicode-bidi: embed;">
<i style="margin: 0px;">Health statistics</i></div>
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<li style="margin: 0px 0px 0px 10px; unicode-bidi: embed;"><a class="external text" href="http://www.gipdatabank.nl/" rel="nofollow" style="background-image: url(http://www.benjaminhughes.net/skins/kindofblue/external.png); background-position: 100% 50%; background-repeat: no-repeat no-repeat; color: #2153b0; margin: 0px; padding-right: 13px; text-decoration: initial;" title="http://www.gipdatabank.nl">GIP database</a> from Health Care Insurance Board (Free online) covering outpatient drug utlization for 85% of population</li>
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<i>The second</i> resource is a <a href="http://ehealth-strategies.eu/database/database.html">series of reports by country</a>, together with a <a href="http://ehealth-strategies.eu/report/eHealth_Strategies_Final_Report_Web.pdf">summary across the continent</a>, of eHealth Infrastructure initiatives in Europe. The final report is dated January 2011 but the speed with which these state and EU funded initiatives are able to progress is such that we suspect these analyses still stand and can be considered fairly current. The summary report is a good document to start with to understand the scope and purpose of the analysis but the individual country briefs are invaluable in their discussion of, for example, the data integration issues thrown up by Spain's regional administration, or the legal impediments to cross-border data sharing.</div>
Bioinformatic5http://www.blogger.com/profile/05450325528399173016noreply@blogger.com0tag:blogger.com,1999:blog-5688296140002460459.post-43191074090090119312012-08-27T13:49:00.000-07:002012-08-27T13:56:39.263-07:00ELIXIR - 'A sustainable infrastructure for managing biological information in Europe' - One year on<div>
It's been nearly a year <a href="http://biomedres.blogspot.co.uk/2011/09/elixir-sustainable-infrastructure-for.html">since we last wrote about Elixir</a>, the European research infrastructure project looking to support life-science information. Our friends at the <a href="http://www.ebi.ac.uk/">European Bioinformatics Institute</a> made us aware at the time that a pan-European project was under way to build and operate a sustainable infrastructure for managing and safeguarding biological information including genetic, protein and complex network analysis outputs.</div>
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So what's been happening in the intervening period?</div>
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Another seven countries have signed the Memorandum of Understanding in that time, broadening the remit and support-base for the initiative. The wider this base the better in light of the organisation's assertion that <span style="background-color: white; color: #666666; font-family: HelveticaNeue-Regular, 'Helvetica Neue', Helvetica, Arial, Verdana, sans-serif; font-size: 14.44444465637207px; line-height: 17.981481552124023px;">"</span><span style="background-color: white; color: #666666; font-family: HelveticaNeue-Regular, 'Helvetica Neue', Helvetica, Arial, Verdana, sans-serif; font-size: 14px; line-height: 18px;">the collection, curation, storage, archiving, integration and deployment of biomolecular data is an immense challenge that cannot be handled by a single organisation or by one country alone, but requires international coordination."</span></div>
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The European <a href="http://cordis.europa.eu/projects/rcn/86704_en.html">Commission's Community Research and Development Information Service (CORDIS) page on the project</a> indicates that the first phase of funding is due to come to an end in December 2012 having run for five years. The project's aims over that period were all directed at gaining the widest possible support for the initiative by means of Memoranda of Understanding and included defining:</div>
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<li><span style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 11px; line-height: 14px;">The scope of the infrastructure, its role and benefits</span></li>
<li><span style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 11px; line-height: 14px;">An appropriate governance and legal structure</span></li>
<li><span style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 11px; line-height: 14px;">A long term funding structure to provide a sustainable infrastructure</span></li>
<li><span style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 11px; line-height: 14px;">The requirements for the European Data Centre in the next 5-10 years</span></li>
<li><span style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 11px; line-height: 14px;">The critical interdisciplinary links that need to be forged between the biological and related scientific disciplines, including medicine, agriculture and the environment</span></li>
<li><span style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 11px; line-height: 14px;">The needs of related European industries</span></li>
<li><span style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 11px; line-height: 14px;">A training strategy to ensure that Europe effectively exploits all the available information</span></li>
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In carrying out this work Elixir assert that they were committed to involving all relevant stakeholders including users, data providers, tools providers to ensure that the infrastructure designed would be fit for purpose and exploring interoperability and supporting standards facilitating the between integration between core and specialised data resources.</div>
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Back in November 2011, we were anticipating the the Interim Board's announcement of the first phase of construction, however, we should point out that this period in Elixir's development is still the Preparatory Phase which title may make sense of the difficulty we've had finding concrete outputs from the project - <a href="http://www.elixir-europe.org/prep/page.php">the website for the Preparatory Phase</a> is a little low-tech and also a little out of date - for more up-to-the-minute news see the <a href="http://www.elixir-europe.org/news">Press Releases page</a> on the main Elixir site from which you can see that much of the recent news involves the 'on-boarding' of various different European states but also covers the <a href="http://www.elixir-europe.org/news/register">inception of their newsletter</a> and, of most interest to us, the start of a new initiative co-ordinted by Elixir: <a href="http://www.biomedbridges.eu/">BioMedBridges</a>.</div>
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In their own words: "<span style="background-color: white; color: #303e48; font-family: Helvetica, Arial, sans-serif; font-size: 14px; line-height: 21.75px;">BioMedBridges is a joint effort of ten </span><a href="http://www.biomedbridges.eu/biomedical-sciences-research-infrastructures" style="background-color: white; border: 0px; color: #0062a0; font-family: Helvetica, Arial, sans-serif; font: inherit; line-height: 21.75px; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; vertical-align: baseline;">biomedical sciences research infrastructures</a><span style="background-color: white; color: #303e48; font-family: Helvetica, Arial, sans-serif; font-size: 14px; line-height: 21.75px;"> on the </span><a href="http://ec.europa.eu/research/infrastructures/index_en.cfm?pg=esfri-roadmap" style="background-color: white; border: 0px; color: #0062a0; font-family: Helvetica, Arial, sans-serif; font: inherit; line-height: 21.75px; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; vertical-align: baseline;">ESFRI roadmap.</a><span style="background-color: white; color: #303e48; font-family: Helvetica, Arial, sans-serif; font-size: 14px; line-height: 21.75px;"> Together, the project </span><a href="http://www.biomedbridges.eu/partners" style="background-color: white; border: 0px; color: #0062a0; font-family: Helvetica, Arial, sans-serif; font: inherit; line-height: 21.75px; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; vertical-align: baseline;">partners</a><span style="background-color: white; color: #303e48; font-family: Helvetica, Arial, sans-serif; font-size: 14px; line-height: 21.75px;"> will develop the shared e-infrastructure—the technical bridges—to allow interoperability between data and services in the biological, medical, translational and clinical domains and thus strengthen biomedical resources in Europe. Launched in January 2012, the four-year initiative has been financed with €10.6 million by the </span><a href="http://ec.europa.eu/research/fp7/" style="background-color: white; border: 0px; color: #0062a0; font-family: Helvetica, Arial, sans-serif; font: inherit; line-height: 21.75px; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; vertical-align: baseline;">European Commission’s Seventh Framework Programme</a><span style="background-color: white; color: #303e48; font-family: Helvetica, Arial, sans-serif; font-size: 14px; line-height: 21.75px;">."</span></div>
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Bioinformatic5http://www.blogger.com/profile/05450325528399173016noreply@blogger.com0tag:blogger.com,1999:blog-5688296140002460459.post-3736674255497370172012-07-12T13:50:00.002-07:002012-07-16T11:30:24.695-07:00UK's e-infrastructure for research needs development<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;">It may be too late to respond to the </span><a href="https://community.ja.net/groups/consultation-e-infrastructure-innovation-and-growth/documents/e-infrastructure-consultation" style="background-color: white; font-family: arial, sans-serif; font-size: 13px;">consultation (e-infrastructure for innovation and growth?)</a><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;"> issued by the UK's research and education computer network </span><a href="https://community.ja.net/" style="background-color: white; font-family: arial, sans-serif; font-size: 13px;">JANET</a><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;"> - but we'll be keeping an eye out for the results.</span><br />
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Their consultation was issued after JANET were asked to sit on the <a href="http://www.bis.gov.uk/policies/science/science-funding/elc">E-Infrastructure Leadership Council</a> which has been created (in March 2012), co-chaired by David Willetts, Minister of State for Universities and Science, to co-ordinate the future governance and effective development of the UK’s research e-infrastructure.</div>
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It's worth checking out the consultation to see the kind of areas for development which JANET have in mind and for the link to the influential 2011 report 'A Strategic Vision for UK e-Infrastructure – A Roadmap for the Development and Use of Advanced Computing, Data and Networks'.</div>Bioinformatic5http://www.blogger.com/profile/05450325528399173016noreply@blogger.com0tag:blogger.com,1999:blog-5688296140002460459.post-87708821431953188502012-07-11T12:56:00.004-07:002012-07-11T12:56:58.769-07:00Cancer Research UK turns to the cloud to support Race For Life site demandWe know a couple of the guys who worked on the revamp of Cancer Research UK's Race for Life site, we watched them passing a toy fish round their scrum meetings and tolerated their thieving of desk-space and chairs from our team - but we didn't know that they had been using cloud-based services to support the massive demand for access to their new site - <a href="http://thecloudcircle.com/article/case-study-cancer-research-uk">read more at the Cloudcircle</a>.Bioinformatic5http://www.blogger.com/profile/05450325528399173016noreply@blogger.com0tag:blogger.com,1999:blog-5688296140002460459.post-84899990199654714562012-06-23T06:31:00.000-07:002012-06-23T06:35:38.980-07:00Tableau - data analysis and visualisation made awesome<br />
Another inspiring pair of presentations last week covering data analysis using Tableau, a new-ish (it's on version 7, so the analytics community have had their input into the development process) Business Intelligence product developed and commercialised by techies from MIT. First impressions? Tableau is awesome.<br />
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Having <a href="http://biomedres.blogspot.co.uk/2012/06/google-bigquery-hospital-episode.html">said that Google's BigQuery could save on the painful set-up and optimisation</a> which facilitates data analysis of vast datasets using traditional database solutions - if you <i>are</i> prepared to or have already gone through the pain and are satisfied with the performance of your kit, this analytics tool will take care of the <i>other</i> pain of producing comprehensible and easily customisable analytics including any map-based representations you require as it has its own inbuilt WMS. The demos we saw using the Olympics travel disruption data and some healthcare financials were equally jaw-dropping - no coding required after you've pointed Tableau at your datasource (every conceivable variant of SQL database, or simple Excel and .csv files; online, offline, Tableau compresses extracts of big-ish datasets down to in-memory usable size - we wonder if you could, in fact, point it at BigQuery?), the whole demo was done using just a mouse, dragging, dropping and clicking - no function is meant to be more than six clicks away, most far lest than that - representing a massive time-saving.<br />
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And it's not just super-smart, it's pretty too - Stephen Few, the <a href="http://www.perceptualedge.com/">Visual Business Intelligence guru</a>, helped to design the charting/representation options, and they really do create an impact.<br />
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You can find out more at both <a href="http://blog.concentra.co.uk/2012/05/31/dashboard-new-proposed-clinical-commissioning-groups/">Concentra's blog where they demonstrate Tableau's web-plugin, showing off the mapping capabilities in regard of Clinical Commissioning Groups data</a> and the <a href="http://www.tableausoftware.com/">Tableau home page</a> - check out the free trial and also the various uses of Tableau server including Sharepoint integration.Bioinformatic5http://www.blogger.com/profile/05450325528399173016noreply@blogger.com2tag:blogger.com,1999:blog-5688296140002460459.post-10770524132149648182012-06-21T05:17:00.000-07:002012-06-21T05:17:10.594-07:00Google BigQuery - Hospital Episode Statistics data analysis made easy (ish)<div>
We had a visit from PA consulting last week, who were very excited about their application of Google's new Big Data solution, BigQuery, to the vast dataset which is the UK's Hospital Episode Statistics (HES).<br />
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We've had to wrestle with HES data before and come off the worse for it - and that was looking only at one year's Inpatient data - about 18 million lines of data. We encountered all kinds of issues in the setup of our bespoke database, created to hold and analyse this data, starting with the published data dictionary's divergence from the fields in our extract, taking in the discovery of duplicated unique episode identifiers (<a href="http://biomedres.blogspot.co.uk/2011/05/heads-up-for-hospital-episode.html">see our post on the response from the NHS Information Centre</a>) and ending with our discovery that the processing power required to run some of our composite queries in a timely fashion was beyond our meagre infrastructure (this was at the now defunct National Cancer Research Institute's Informatics Initiative).<br />
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We could really have used the facility which BigQuery is set to provide. The guys from PA described how they had obtained the entire start-to-finish HES dataset across all three areas of collection (inpatient, outpatient and A&E) and loaded this into BigQuery (this being the most arduous part of the process, the data arriving on 27 DVDs and taking a couple of weeks to upload) prior to demonstrating the speed with which it was able to provide answers and how the data could be linked to google maps and google docs' spreadsheet application to dynamically produce visual and graphical analyses.</div>
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BigQuery dynamically calls in servers to assist in the running of a query based on the processing power required and then releases them once the query has been executed. The result of being able to access Google's immense army of servers is that without any of the usual time-consuming optimisation (indexing etc.) which supports enhanced performance on traditional database technologies, the user can execute a query against billions of data points in seconds. If you're working to some degree 'in the dark', uncertain of how you wish to structure your data and what analyses you will require it to support, you can experiment on vast datasets without waiting hours for queries to produce results (or fail!) - a facility which would have delivered huge time-savings to us in our HES analysis.<br />
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PA have a video describing their work and approach <a href="http://www.youtube.com/watch?v=rK7s8W0ZhSU">here</a> and Google provide further information about BigQuery <a href="https://developers.google.com/bigquery/docs/overview">here</a>.Bioinformatic5http://www.blogger.com/profile/05450325528399173016noreply@blogger.com0tag:blogger.com,1999:blog-5688296140002460459.post-13016065877096951152012-06-11T13:13:00.001-07:002012-06-14T03:37:58.053-07:00Clinical data - toward a single dataset supporting Research, Service Delivery and Performance ManagementWe were lucky enough last month to discuss with the Finance Director of a major London healthcare service, the use of enterprise data, from clinical to financial, to support performance management - and were struck by the extent to which the processes which support performance management analytics mirror those which support clinical research.<br /><br /><div><br /></div><br /><div>We were put in mind of our conversations earlier this year with <a href="http://biomedres.blogspot.co.uk/2012/01/data-integration-platforms-research-and_04.html">Oracle and other vendors whose healthcare data warehouse platforms and attendant applications were being demonstrated as solutions to both research and performance measurement problems</a> - this in turn called to mind the comments we had heard from data experts coming into healthcare from other industries who could not understand why information of all kinds pertinent to the administration of healthcare, from genomic analyses to staff costs, were not seen as belonging to a single and vitally important information asset.</div><br /><div><br /></div><br /><div>The concerns of this London hospital in getting a handle on their data were strikingly similar to those of the research institutes we have spoken with - and indeed what they describe as performance management is really research by another name - when they correlate outcomes with treatment modalities and different packages of care, they are using their Business Intelligence architecture in many ways like a clinical research engine but with the addition of financial data .</div><br /><div><br /></div><br /><div><br /><div>Their core issue is data quality - they currently have four main clinical IT systems - one for each borough subsumed into their organisation. Trying to use these to derive information even at the level of 'number of patient encounters' has not been straightforward. Although they didn't go into it, we should imagine that supporting those clinical systems must be an array of systems capturing e.g. pathology, radiology, cytology data at a more granular level.</div><br /><div><br /></div><br /><div>In addition, their financial data resides in three ledgers each with different coding - a 'consolidation nightmare' was how they described the move to a single ledger; painful but essential as they attempt to get a grip on expenditure.</div><br /><div><br /></div><br /><div>The introduction of Service Line Reporting of income and expenditure (in order to assess profit by service) is driving their data validation and data quality improvement - but their clinical operations requirement to deliver an integrated service, developing 'packages of care' rather than looking at individual activities related to the same condition in isolation, is also dependent on quality and timely data - both financial and clinical performance management require the facility to benchmark accurately.</div><br /><div><br /></div><br /><div>Touching on other IT issues their organisation faces, they mentioned that the mobile workforce are not well supported by technology - "it's still a surprise that no-one has developed a good mobile working solution for healthcare in the UK". Their words, not ours! They did suggest complications which we hadn't thought of hitherto, coming from a tertiary care background as we do, for example nurses on home visits may not be able to work online, thus need data stored locally to upload later which means on-device storage of personal identifiable data. We can't believe that is still an issue from a technological perspective, however, we can imagine that risk-aversion in respect of personal data in the healthcare industry is dampening demand for solutions - anyone care to offer a more informed opinion?All comments welcome!</div><br /><div><br /></div><br /><div>We were really interested to hear how they addressed the development of their Business Intelligence capabilities - developing KPIs to meet significant and varied requirements from different commissioners. Their previous dashboards had been provided by NHS London - their goal at that time had been to ensure compliance with standards and regulations but as they have matured they now have to develop their own dashboards to meet more complex internally-driven reporting requirements. To do this, they have their own Performance and Information team who work on data collation and aggregation - creating Performance Packs - which provide detail by Service line under headings such as Operations, Quality, Finance, Workforce etc. supported by detailed analysis across the board from hard to soft data.</div><br /><div><br /></div><br /><div>The capacity to present a performance summary across directorates has led to internal competition which is already leading to performance improvements. Their next steps?</div><br /><div><br /></div><br /><div>the P&I teams are looking to automate the production of their performance packs and to create an overall dashboard for the organisation, leading in turn to a Balanced Scorecard. </div><br /><div><br /></div><br /><div>Having realised that their previous KPIs and the systems which provided the data were inadequate, they embarked on a redesign of their processes by, and in this order!:</div><br /><div><br /><ul><br /><li>Defining the goals / purpose / vision of the organisation</li><br /><li>Asking what information they need to support the delivery of these</li><br /><li>Asking what KPIs would adequately measure their delivery</li><br /><li>Then developing the systems which support the provision of the answers to the above</li></ul></div><br /><div>They are no longer looking simply at meeting regulatory reporting requirements - but at using their data internally to drive their performance - they are setting up data quality fora - having an external data quality audit and linking their output data to their income - and beginning to realise the benefits of placing data at the heart of the organisation.</div><br /><div><br /></div><br /><div></div></div>Bioinformatic5http://www.blogger.com/profile/05450325528399173016noreply@blogger.com0tag:blogger.com,1999:blog-5688296140002460459.post-26360673782592864612012-05-14T04:47:00.000-07:002012-05-14T04:49:39.356-07:00Clinical Practice Research Datalink courts potential usersWe received on Friday our invitation to the Clinical Practice Research Datalink (CPRD) Users Meeting that will be held at the MHRA offices in London on 24th May 2012, consisting of a series of short presentations by representatives of CPRD and external partner organisations to give "further insight, and an opportunity for input, into the current and future aims of CPRD."<br />
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The background we have covered severally before (see <a href="http://biomedres.blogspot.co.uk/2011/11/launch-of-clinical-practice-research.html">here</a> and <a href="http://biomedres.blogspot.co.uk/2012/04/clinical-practice-research-datalink-is.html">here</a>): "CPRD is the new English NHS observational data and interventional research service, jointly funded by the NHS National Institute for Health Research (NIHR) and the Medicines and Healthcare products Regulatory Agency (MHRA). It combines the piloting work of the Research Capabilities Programme (RCP) and the existing General Practice Research Database (GPRD)."</div>
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CPRD services are designed to maximise the way anonymised NHS clinical data can be linked to enable many types of observational research and deliver research outputs that are beneficial to improving and safeguarding public health. CPRD will act to provide services to a wide range of researchers and the aim of the Users Meeting will be to ensure that its plans meet the needs of the broad cross section of researchers in academia, the NHS and commercial companies both in the UK and globally.<br />
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The specific topics that will be covered on the day include:<br />
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<li>Pragmatic and Phase III - IV clinical trials</li>
<li>Multidimensional data quality </li>
<li>Hospital prescribing data </li>
<li>Models for linkage </li>
<li>Disease and patient group data marts</li>
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The day will provide "several opportunities for potential users to raise and discuss their priorities and requirements" to ensure CPRD meets researchers' needs. <br />
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It is possible that we won't be able to attend ourself so if any of our readers are planning on going along, let us know and we'll get in touch to see if you want to post some feedback on these pages!</div>Bioinformatic5http://www.blogger.com/profile/05450325528399173016noreply@blogger.com0tag:blogger.com,1999:blog-5688296140002460459.post-20107549615766767072012-05-07T12:13:00.000-07:002012-05-07T12:13:37.987-07:00Managing Research Data - the Joint Information Systems Committee ProgrammeIn <a href="http://biomedres.blogspot.co.uk/search?q=brisskit">covering the BRISSkit vision for a cloud-based open-source "research application as a service"</a> at the end of last year, we mentioned the Joint Information Systems Committee's (JISC)
<span style="background-color: white; color: #190b46; font-family: Arial, sans-serif; font-size: 12px;">Managing Research Data workstream about which we've been hearing a lot more recently and thought we should pass on the basics and a link for your own browsing:</span><div>
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<span style="background-color: white; color: #190b46; font-family: Arial, sans-serif; font-size: 12px;">JISC are a non departmental public body who support higher education and research in the UK </span><span style="background-color: white; font-family: sans-serif; font-size: 13px; line-height: 19px;">by providing advice on the use of ICT - their Managing Research Data workstream supports both good data management and the sharing of data</span><span style="background-color: white; font-size: 11px; line-height: 15px;"><span style="font-family: Verdana;"> "</span></span><span style="background-color: white; font-family: Verdana; font-size: 11px; line-height: 15px;">for the benefit of UK Higher Education and Research". </span><span style="background-color: white; color: #190b46; font-family: Arial, sans-serif; font-size: 12px;">Their work in this area focuses on infrastructure, practice and skills:</span></div>
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<li>piloting essential research data management infrastructures within institutions and for distributed research groups</li>
<li>improving practice in research data management planning</li>
<li>developing tools to help institutions plan their research data management practice</li>
<li>encouraging the publication of research data and demonstrating the benefits of improved methods for citing, linking and integrating research data</li>
<li>and, stimulating the acquisition of appropriate skills, among academics and research support staff in Universities</li>
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<span style="color: #190b46; font-family: Arial, sans-serif;"><span style="font-size: 12px;">Follow <a href="http://www.jisc.ac.uk/whatwedo/programmes/mrd.aspx">this link</a> to their page which contains further information about their internationally recognised Digital Curation Centre and more information on the five strands of the programme which include projects, planning, tools and training.</span></span></div>
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We've blogged in the <a href="http://biomedres.blogspot.co.uk/2011/09/enterprise-breadth-it-platform-oris-to.html">past about the Oncology Research Information System</a> as an enterprise-breadth platform to support personalised cancer medicine.<br />
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When the System was <a href="http://biomedres.blogspot.co.uk/search?q=ORIS">presented at the NOCRI Information Systems Workshop</a> towards the end of last year we gave you this overview taken from Prof. Peter Parker's abstract:<br />
<br />
<span style="background-color: white; color: #190b46; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14px; line-height: 19px;">"ORIS is an IT platform that enables the routine extraction of consented, structured clinical data (notes, images, etc), its pseudonymisation and export into a research data store, from which patient cohorts can be selected and their information linked to molecular data derived from research"</span><br />
<br />
We received an update from IDBS who are leading on the implementation and who look to have countered suggestions that the project was slow to deliver: "As you know until now, cross-hospital translational medicine technology to consolidate data across different scientific domains has been the subject of some debate but we have seen little movement in the industry in terms of actually making it happen. It is very pleasing to have the ORIS platform now in production [in] just under a year from when we started... with a lot of work that is now in the product so as we implement now the time scales are much reduced."<br />
<br />
They also sent us a link to the <a href="http://www.idbs.com/Data-Management-News/Press-Release/idbs-delivers-platform-to-accelerate-personalized-cancer-care-at-kings-health%20partners/">press-release which gives further information</a> and includes a link to details of their <a href="http://www.idbs.com/solutions/healthcare/enterprise-translational-medicine/" style="color: #00aeef; cursor: pointer; font-family: Arial, Helvetica, sans-serif; font-size: 14px; line-height: 21px; text-align: left;" target="_blank">Enterprise Translational Medicine Solution</a>.<br />
<br />Bioinformatic5http://www.blogger.com/profile/05450325528399173016noreply@blogger.com1tag:blogger.com,1999:blog-5688296140002460459.post-30508785189664913792012-04-04T15:12:00.000-07:002012-04-04T15:12:43.267-07:00Clinical Practice Research Datalink is finally here - or is it?<span style="background-color: white; color: #190b46; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14px; line-height: 19px;">The new </span><a href="http://biomedres.blogspot.co.uk/2011/11/launch-of-clinical-practice-research.html" style="background-color: white; color: #d59383; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14px; line-height: 19px; text-decoration: none;">Clinical Practice Research Datalink</a><span style="background-color: white; color: #190b46; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14px; line-height: 19px;"> about which we have</span><a href="http://www.blogger.com/blogger.g?blogID=5688296140002460459#editor/target=post;postID=380793719541328625" style="background-color: white; color: #d59383; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14px; line-height: 19px; text-decoration: none;"> blogged</a><span style="background-color: white; color: #190b46; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14px; line-height: 19px;"> much in the past has finally arrived (</span><a href="http://www.cprd.com/intro.asp">http://www.cprd.com/intro.asp</a>) amid a certain amount of fanfare - see <a href="http://www.pharmatimes.com/Article/12-04-03/Clinical_Practice_Research_Datalink_launched_in_the_UK.aspx">this</a> from Pharma Times, <a href="http://www.pmlive.com/digital_intelligence_blog/archive/2012/mar_2012/uk_clinical_practice_research_datalink_e-health_service">this</a> from PMLive and <a href="http://www.gponline.com/News/article/1124879/gp-practice-data-shared-widely-drug-industry-nhs/">this</a> from GP magazine.<br />
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You may notice that the GPRD pages now redirect to this site and to a certain extent, this is largely a rebranding exercise at the moment. Behind the scenes a team at the DoH are trying to ensure that major data sources are willing and able to engage with this initiative but the speed at which they come online remains to be seen. We'll fill you in further on plans for a researchers data-catalogue interface as this project advances - and if CPRD are not offering that just yet, perhaps the MRC are - we'll get you up to date with the MRC's Data Support Service before the week is out.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjighCXIhkpD-c1baAfFXIhNUvS5JbXsJTI_ga3uo6x6T8_9nIXebZMUR6LZEQHaw98X6mVD4FJ3QShNYfdFQ28ah1FGIgdgCZf9LfWfkVEh58w7NwAP2ukYaGGHr6J1O2H4mw3ZRqMkfQ/s1600/CPRD.PNG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjighCXIhkpD-c1baAfFXIhNUvS5JbXsJTI_ga3uo6x6T8_9nIXebZMUR6LZEQHaw98X6mVD4FJ3QShNYfdFQ28ah1FGIgdgCZf9LfWfkVEh58w7NwAP2ukYaGGHr6J1O2H4mw3ZRqMkfQ/s320/CPRD.PNG" width="320" /></a></div>
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<span style="background-color: white; color: #190b46; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14px; line-height: 19px;"><br /></span>Bioinformatic5http://www.blogger.com/profile/05450325528399173016noreply@blogger.com0tag:blogger.com,1999:blog-5688296140002460459.post-60328048365584393712012-03-21T10:55:00.000-07:002012-03-21T10:56:26.985-07:00Clinical Practice Research Datalink edges nearerWe were interested to find today this <a href="http://www.cprd.com/home/">URL</a> for the new <a href="http://biomedres.blogspot.co.uk/2011/11/launch-of-clinical-practice-research.html">Clinical Practice Research Datalink</a> about which we have<a href="http://www.blogger.com/blogger.g?blogID=5688296140002460459#editor/target=post;postID=380793719541328625"> blogged</a> much in the past. Click on it and you will see the screen below (click the picture to zoom in) and thus be able to sign up for news of it's development. April seems pretty close now though we were aware that the Department of Health had set out some pretty aggressive deadlines - we hope to be surprised (pleasantly) come April Fools [note also that the MHRA appear to be hiring now for data specialists...]<br />
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-0VBt_iwByegqljq2lFll0u6aEs64nPKLxeUVBeoBWlMX45z2GslhsJKYXlGQEL26dSapnjtChXYk-0gRvxjqh5bsHFI24FQoGl17JouXa2kXVjluG_7rCioQhffWZPhFLU-VwVwq8gE/s1600/CPRD.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img aea="true" border="0" height="297" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-0VBt_iwByegqljq2lFll0u6aEs64nPKLxeUVBeoBWlMX45z2GslhsJKYXlGQEL26dSapnjtChXYk-0gRvxjqh5bsHFI24FQoGl17JouXa2kXVjluG_7rCioQhffWZPhFLU-VwVwq8gE/s320/CPRD.png" width="320" /></a></div>Bioinformatic5http://www.blogger.com/profile/05450325528399173016noreply@blogger.com0tag:blogger.com,1999:blog-5688296140002460459.post-1243395059028261522012-03-20T05:49:00.001-07:002012-03-21T09:59:42.277-07:00Allied health professionals (AHP) Qality Improvement (QIPP) toolkitsCourtesy of the King's Fund:<br />
<br />
The Department of Health has identified potential savings and the opportunity to provide better care by involving more AHPs in patient care. This series of online tools aims to help the NHS identify how therapists can intervene at different stages of a patient's condition to improve patient care whilst saving on costs. This first set of toolkits covers how AHPs can help to improve care for stroke; oral nutritional support; musculoskeletal care; cancer; and diabetes.<strong></strong><br />
<ul>
<li><a href="http://www.networks.nhs.uk/nhs-networks/ahp-networks/ahp-qipp-toolkits" target="_blank">Toolkits</a></li>
<li><a href="http://nds.coi.gov.uk/content/Detail.aspx?ReleaseID=423771&NewsAreaID=2" target="_blank">Department of Health - press release</a></li>
</ul>Bioinformatic5http://www.blogger.com/profile/05450325528399173016noreply@blogger.com0tag:blogger.com,1999:blog-5688296140002460459.post-47550465053659835582012-03-06T14:37:00.000-08:002012-03-06T14:39:30.381-08:00Wales - what's their secret? Delivering successful healthcare informatics - care recordsWe <a href="http://biomedres.blogspot.com/2011/09/english-healthcare-research-hampered-by.html">blogged in the past </a>about the fact that Australia, <a href="http://biomedres.blogspot.com/2011/09/scottish-health-informatics-programme.html">Scotland</a> and Wales had stolen a march on the English in developing data linkage facilities for healthcare research and had heard this blamed on the heterogeneity of our healthcare systems. We now read in eHealth Insider that "<span style="color: #717174; font-family: Verdana, Helvetica, sans-serif; font-size: 11px; line-height: 18px;">Wales
is also having success with sharing patient data via its Individual Health
Record. More than 300 GP practices have switched on access to the record, which
is available to emergency care providers. It includes demographic information,
medication, allergies, test and x-ray results, and medical problems from the
past two years."</span><br />
<span style="font-family: inherit;"><span style="line-height: 18px;"><br /></span></span><br />
<span style="font-family: inherit;"><span style="line-height: 18px;">A great comment on the <a href="http://www.ehi.co.uk/news/primary-care/7564/wales-makes-good-progress-with-ihr">eHealth Insider article</a> compares the modest investment behind the </span></span><span style="line-height: 18px;">Welsh achievement to that behind the English National Programme for IT with its "modest return".</span><br />
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<tr><td width="239"><div style="border-bottom-color: rgb(255, 255, 255); border-bottom-style: solid; border-bottom-width: 7px; border-top-color: rgb(255, 255, 255); border-top-style: solid; border-top-width: 7px; color: #717174; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 11px; font-weight: bold; line-height: 18px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">
<a href="https://webmail.cancerresearchuk.org/owa/redir.aspx?C=5d58f26bd5da4ca987950849faf8cb9c&URL=http%3a%2f%2fp2trc.emv2.com%2fHS%3fa%3dENX7Cqlbv3FJ8SA9MKJMRYLnGHxKLPEUWPcStGb5lw8W0bBhOG5mpqVsje_Hhe-oNlL9" target="_blank">"It's hard to comprehend that the relatively small sums discussed
here have resulted in the extent of progress made so far in Wales; particularly
when we consider the largesse associated with the English NPfIT [for] such a
modest return."</a></div>
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</div>Bioinformatic5http://www.blogger.com/profile/05450325528399173016noreply@blogger.com1tag:blogger.com,1999:blog-5688296140002460459.post-58824301606304370482012-02-27T10:40:00.000-08:002012-02-27T10:40:53.060-08:00News from the EMBL-European Bioinformatics Institute: Enzyme Portal Launches<br />
<div>
We received the following press release today from the European Bioinformatics Institute announcing the launch of their <a href="https://webmail.cancerresearchuk.org/owa/redir.aspx?C=5d58f26bd5da4ca987950849faf8cb9c&URL=http%3a%2f%2fwww.ebi.ac.uk%2fenzymeportal%2f" target="_blank">Enzyme Portal</a>, a freely available resource for people who are
interested in the biology of enzymes and proteins with enzymatic activity:</div>
<div>
<br /></div>
<div>
"Enzymes catalyse the myriad reactions that take place in living
organisms, allowing chemical changes to occur that would otherwise need
conditions that are incompatible with life. Until now, information about enzymes
was scattered throughout many different resources. This meant that you had to
know exactly what you were looking for, which could be a real barrier
to discovery.</div>
<div>
<br />
The Enzyme Portal mines and displays data about proteins
with enzymatic activity from public repositories via a single search, and
includes biochemical reactions, biological pathways, small molecule chemistry,
disease information, 3D protein structures and relevant scientific literature.
It summarises information in the <a href="https://webmail.cancerresearchuk.org/owa/redir.aspx?C=5d58f26bd5da4ca987950849faf8cb9c&URL=http%3a%2f%2fwww.uniprot.org%2fhelp%2funiprotkb" target="_blank">UniProt knowledge base</a>; the <a href="https://webmail.cancerresearchuk.org/owa/redir.aspx?C=5d58f26bd5da4ca987950849faf8cb9c&URL=http%3a%2f%2fpdbe.org%2f" target="_blank">Protein Data Bank in Europe</a>; <a href="https://webmail.cancerresearchuk.org/owa/redir.aspx?C=5d58f26bd5da4ca987950849faf8cb9c&URL=http%3a%2f%2fwww.ebi.ac.uk%2frhea%2f" target="_blank">Rhea</a>, a database of enzyme-catalysed reactions; <a href="https://webmail.cancerresearchuk.org/owa/redir.aspx?C=5d58f26bd5da4ca987950849faf8cb9c&URL=http%3a%2f%2fwww.reactome.org%2f" target="_blank">Reactome</a>, a database of biochemical pathways; <a href="https://webmail.cancerresearchuk.org/owa/redir.aspx?C=5d58f26bd5da4ca987950849faf8cb9c&URL=http%3a%2f%2fwww.ebi.ac.uk%2fintenz%2f" target="_blank">IntEnz</a>, a resource with enzyme nomenclature information; <a href="https://webmail.cancerresearchuk.org/owa/redir.aspx?C=5d58f26bd5da4ca987950849faf8cb9c&URL=http%3a%2f%2fwww.ebi.ac.uk%2fchebi%2f" target="_blank">ChEBI</a> and <a href="https://webmail.cancerresearchuk.org/owa/redir.aspx?C=5d58f26bd5da4ca987950849faf8cb9c&URL=http%3a%2f%2fwww.ebi.ac.uk%2fchembl%2f" target="_blank">ChEMBL</a>, which contain information about small-molecule
chemistry and bioactivity; and <a href="https://webmail.cancerresearchuk.org/owa/redir.aspx?C=5d58f26bd5da4ca987950849faf8cb9c&URL=http%3a%2f%2fwww.ebi.ac.uk%2fthornton-srv%2fdatabases%2fCoFactor%2f" target="_blank">CoFactor</a> and <a href="https://webmail.cancerresearchuk.org/owa/redir.aspx?C=5d58f26bd5da4ca987950849faf8cb9c&URL=http%3a%2f%2fwww.ebi.ac.uk%2fthornton-srv%2fdatabases%2fMACiE%2f" target="_blank">MACIE</a> for highly detailed, curated information about cofactors
and reaction mechanisms.<br />
<br />
The <a href="https://webmail.cancerresearchuk.org/owa/redir.aspx?C=5d58f26bd5da4ca987950849faf8cb9c&URL=http%3a%2f%2fwww.ebi.ac.uk%2fenzymeportal%2f" target="_blank">Enzyme Portal</a> covers a large number of species, including the
key organisms used in biological research, and makes it simple to compare the
characteristics of equivalent enzyme activities in different
organisms.<br />
<br />
“The Enzyme Portal will serve researchers interested in the
native metabolism of organisms as well as those working in drug discovery or
chemical biology,” explained Dr Christoph Steinbeck, Head of Cheminformatics and
Metabolism at EMBL-EBI. “The resource seamlessly bridges the various
enzyme-related aspects of these areas, all the way from the small molecules
– which may occur naturally in the organism of study or be introduced – to the
3D structure of the enzymes affected and the genomic information coding for
those.”<br />
<br />
The design of the Enzyme Portal was based entirely on
user demand and feedback. “We didn’t come in with preconceived ideas of what
it should be; it was designed by users, for users,”
said Cheminformatics Coordinator Paula de Matos. “We had enough data, but it was
distributed over 10 different resources. Now, we have a central place where they
can access and explore all of it – including information about
disease.”<br />
<br />
“The Enzyme Portal takes the researcher’s perspective,” added
User Experience Analyst Jenny Cham. “We leveraged user-testing feedback to
create it, making it the first EMBL-EBI resource to have a fully user-centred
design from scratch. This approach was not only cost-effective; it made decision
making and communication much easier – particularly in terms of design
and technology choices.”</div>
<div>
<br /></div>
<div>
<a href="https://webmail.cancerresearchuk.org/owa/redir.aspx?C=5d58f26bd5da4ca987950849faf8cb9c&URL=http%3a%2f%2fwww.ebi.ac.uk%2fenzymeportal%2f" target="_blank">www.ebi.ac.uk/enzymeportal</a>"</div>
<div>
<br /></div>
<div>
<div>
To download images, please visit: <a href="https://webmail.cancerresearchuk.org/owa/redir.aspx?C=5d58f26bd5da4ca987950849faf8cb9c&URL=http%3a%2f%2fwww.ebi.ac.uk%2fInformation%2fNews%2fpress-releases%2fpress-release-22022012-Enzyme_portal.html" target="_blank">http://www.ebi.ac.uk/Information/News/press-releases/press-release-22022012-Enzyme_portal.html</a></div>
<div>
<br /></div>
<div>
To watch a short video about the Enzyme Portal on our YouTube channel,
visit: <a href="https://webmail.cancerresearchuk.org/owa/redir.aspx?C=5d58f26bd5da4ca987950849faf8cb9c&URL=http%3a%2f%2fyoutu.be%2fKldp0WXcxUM" target="_blank">http://youtu.be/Kldp0WXcxUM</a></div>
</div>Bioinformatic5http://www.blogger.com/profile/05450325528399173016noreply@blogger.com0tag:blogger.com,1999:blog-5688296140002460459.post-3807937195413286252012-02-22T07:25:00.000-08:002012-02-22T07:25:09.120-08:00General Practice data for researchWe have just read, courtesy of <a href="http://www.ehi.co.uk/news/industry/7543/one-supplier-to-go-for-gpes">eHealth Insider</a> that "<span style="color: #717174; font-family: Verdana, Helvetica, sans-serif; font-size: 11px; line-height: 18px;">the NHS Information Centre is on the verge of having all GP clinical systems
suppliers signed up to the General Practice Extraction Service. Emis, Microtest,
iSoft and INPS have signed up to extract and communicate data to the NHS IC, and
TPP expects to have a contract signed within weeks."</span><br />
<span style="color: #717174; font-family: Verdana, Helvetica, sans-serif; font-size: 11px; line-height: 18px;"><br /></span><br />
For more information on the General Practice Extraction Service (GPES), see the <a href="http://www.ic.nhs.uk/gpes">NHS IC GPES</a> page which currently only mentions the contract with EMIS and whilst it describes the value of GP data, does not allude to its use for research but only in commissioning despite asserting that "GP patient records are the most complete record of a patient's health within
the NHS. They comprise a wealth of information about patient care, the
prevalence of diseases and treatments given."<br />
<br />
So where does this leave services like GPRD, THIN and QRESEARCH. Well, we know that GPES won't be fully up and running for another year at least, and that GPRD will become the <a href="http://biomedres.blogspot.com/2011/11/launch-of-clinical-practice-research.html">CPRD (Clinical Practice Research Datalink</a>) if all goes to plan. In the interim, as per <a href="http://www.hpa.org.uk/web/HPAweb&HPAwebStandard/HPAweb_C/1201265889778">this from the Health Protection Agency</a>, GPRD and QRESEARCH will still be providing primary care data for research, but what will the landscape look like by the end of 2013?Bioinformatic5http://www.blogger.com/profile/05450325528399173016noreply@blogger.com0tag:blogger.com,1999:blog-5688296140002460459.post-78441451271900628212012-02-21T14:16:00.000-08:002012-02-21T14:16:16.179-08:00Patients' views on participating in medical research - Part 2: Engagement and ParticipationOur last post here began our summary of recent work on patients' attitudes to participating in medical research - part of our primer on the current state of play in clinical research in the UK selecting choice elements from recent reports; check out the footnotes for interesting sources to follow up. We include in this a look at the influence of media coverage of issues pertaining to data security on patients' attitudes and behaviour.<br />
<br />
As always, let us know what you think - if there are more recent / complete / credible studies out there which draw different conclusions, let us know!<br />
<br />
<h3>
<a href="" name="_Toc303676847"><span style="font-family: inherit; font-size: large;">Engagement and participation</span></a></h3>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: inherit;">The UK has a long history of public support
for health research, as evidenced by the large number of participants in
clinical trials and population studies (For example, the UK Collaborative Trial
of Ovarian Cancer Screening and UK Biobank have recruited their targets of
200,000 and 500,000 individuals (respectively) with minimal objection to the
use of their healthcare data) and the generous contributions to medical
research charities such as Cancer Research UK and the British Heart Foundation.<a href="file:///F:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2030_09_2011%20v1%20Social.docx#_ftn1" name="_ftnref1" title=""><span class="MsoFootnoteReference"><!--[if !supportFootnotes]--><span class="MsoFootnoteReference"><span style="line-height: 115%;">[1]</span></span><!--[endif]--></span></a> <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: inherit;">Public engagement initiatives in relation to
specific issues, such as the use of patient data, generally show that research
is warmly supported. The attitudes of over 1,000 adults towards participating
in health research were examined in the Wellcome Trust Monitor survey.
Seventy-one per cent of participants indicated that they would be willing to
give blood or tissue samples for research and 62% were willing to test a new
treatment for a disease from which they were suffering.<a href="file:///F:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2030_09_2011%20v1%20Social.docx#_ftn2" name="_ftnref2" title=""><span class="MsoFootnoteReference"><!--[if !supportFootnotes]--><span class="MsoFootnoteReference"><span style="line-height: 115%;">[2]</span></span><!--[endif]--></span></a><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: inherit;">Evidence from two national research studies
demonstrates that a small number of patients complain about receiving direct
invitations to participate in research. The UK Collaborative Trial of Ovarian
Screening is one of the largest ever randomised controlled trials, covering 13
NHS Trusts in England, Wales and Northern Ireland, with successful recruitment
of more than 200,000 women. Of the 1.2 million women invited to participate in
the study only 32 complained about being contacted. UK Biobank reported from
its integrated pilot phase that approximately 1 person from 1,000 invitations
indicated that they did not want to participate because of concerns that their
contact details had been provided to UK Biobank by the NHS.<a href="file:///F:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2030_09_2011%20v1%20Social.docx#_ftn3" name="_ftnref3" title=""><span class="MsoFootnoteReference"><!--[if !supportFootnotes]--><span class="MsoFootnoteReference"><span style="line-height: 115%;">[3]</span></span><!--[endif]--></span></a><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: inherit;">There are a large number of organisations
working to improve patient and public engagement with health research,
including (but not limited to) UK Clinical Research Collaboration (UKCRC),
INVOLVE, regulators themselves, the medical Royal Colleges, research charities
and disease specific patient groups working to help the public understand the
role and importance of research as an integral part of the care system.</span> </div>
<h2>
<a href="" name="_Toc303676848"><span style="font-family: inherit; font-size: large;">Media view
– data protection</span></a></h2>
<div class="MsoNormal">
<span style="line-height: 115%;"><span style="font-family: inherit;">The influential role of mass media has important
implications for the formation of public opinion and consequently public
behaviour and the actions of policy makers. The most significant impact on
attitudes towards the storage, transmission and use of personal data in
healthcare is made by coverage of breaches of regulations and guidelines.</span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span style="font-family: inherit;"><br /></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span style="font-family: inherit;"><o:p></o:p></span></span><span style="line-height: 115%;"><span style="font-family: inherit;">Though many of the stories do not relate to data used in
research <i>per se</i>, their impact
contributes to patients’ concerns about <i>any</i>
use of personal medical data.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span style="font-family: inherit;"><br /></span></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><span style="line-height: 115%;">Storage and transmission of data are key to research, many
large datasets (for example the national disease registries) inducting data
from a variety of sources and releasing data for research to geographically
dispersed users. A key aspect of the conduct of research is the ease with which
those researchers can receive the data. The choice of transmission method is
not driven solely by actual risk analysis: </span><span style="line-height: 115%;">while
an encrypted DVD has a high level of innate security, public perception of
sensitive inform</span><span style="line-height: 115%;">ation being moved around on DVD</span><span style="line-height: 115%;">s, memory sticks and laptops is an important
consideration. In fact it was a major issue identified in the UK Ministry of
Justice's report on Data Sharing, 2008.</span><span class="MsoFootnoteReference"><span style="line-height: 115%;"><!--[if !supportFootnotes]--><span class="MsoFootnoteReference"><span style="line-height: 115%;"><a href="file:///F:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2030_09_2011%20v1%20Social.docx#_ftn4" name="_ftnref4" title="">[4]</a></span></span><a href="file:///F:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2030_09_2011%20v1%20Social.docx#_ftn4" name="_ftnref4" title=""><!--[endif]--></a></span></span><span style="line-height: 115%;"><o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><span class="MsoFootnoteReference"><span style="line-height: 115%;"><span class="MsoFootnoteReference"><br /></span></span></span></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><span style="line-height: 115%;">A recent article from eWeekeurope.co.uk backs up perception
with data under the inflammatory headline “A Freedom of Information request by…
Software AG has revealed that most public sector bodies have no idea about
secure data transfer.”<a href="file:///F:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2030_09_2011%20v1%20Social.docx#_ftn5" name="_ftnref5" title=""><span class="MsoFootnoteReference"><!--[if !supportFootnotes]--><span class="MsoFootnoteReference"><span style="color: black; line-height: 115%;">[5]</span></span><!--[endif]--></span></a> The
article cites recent examples of the loss of sensitive information by public
bodies: “</span><span lang="EN-US" style="color: #333333; line-height: 115%;">A couple of
years ago, Her Majesty’s Revenue and Customs (HMRC) lost a number of CDs
containing private information on thousands of people. But there have been many
more recent examples. Last July the UK Ministry of Defence admitted it had </span><span lang="EN-US" style="line-height: 115%;">lost an entire server from a secure building<span style="color: #333333;"> – as well as 1.7 million individuals’ personal data. In
November the UK Rural Payments Agency (RPA) lost backup tapes containing the </span>payment
and banking details of 100,000 farmers in the United Kingdom<span style="color: #333333;">. And only last month an NHS worker in the secure mental
health unit of a Scottish hospital was suspended, after he </span>lost a USB
stick containing patients’ medical records<span style="color: #333333;">. The USB
stick apprently contained unencrypted sensitive information – including the
criminal histories of some violent patients at the Tryst Park unit at Bellsdyke
psychiatric hospital. The stick was later found by a 12-year-old boy in the car
park of an Asda supermarket.”<o:p></o:p></span></span></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><span lang="EN-US" style="line-height: 115%;"><span style="color: #333333;"><br /></span></span></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><span lang="EN-US" style="color: #333333; line-height: 115%;">The NHS was recently
(April 2010) </span><span lang="EN-US" style="line-height: 115%;">revealed by the Information
Commissioner’s Office<span style="color: #333333;"> (ICO) to be responsible for
the </span></span></span><span style="color: #333333; line-height: 115%;"><span style="font-family: inherit;">highest number of serious data breaches of any UK
organisation since the end of 2007. David Smith, deputy commissioner at the ICO
told the Infosec security conference the NHS had highlighted 287 breaches to it
in the period, accounting for more than 30% of the total number reported.<a href="file:///F:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2030_09_2011%20v1%20Social.docx#_ftn6" name="_ftnref6" title=""><span class="MsoFootnoteReference"><!--[if !supportFootnotes]--><span class="MsoFootnoteReference"><span style="color: #333333; line-height: 115%;">[6]</span></span><!--[endif]--></span></a> Most of
the breaches were the result of stolen data or hardware, followed by 82 cases
of lost data or hardware. Richard Vautrey, the deputy chair of the British
Medical Association's GPs committee thinks the number of breaches reflect the
size and complexity of the NHS (the UK's largest employer with 1.7m staff) as
well as its culture of openness.<a href="file:///F:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2030_09_2011%20v1%20Social.docx#_ftn7" name="_ftnref7" title=""><span class="MsoFootnoteReference"><!--[if !supportFootnotes]--><span class="MsoFootnoteReference"><span style="color: #333333; line-height: 115%;">[7]</span></span><!--[endif]--></span></a> Whilst
comments in the BBC’s coverage mention in mitigation that the public sector’s
culture of reporting all breaches contrasted with the private sector’s
behaviour, these do little to lessen the impact of the headline: “NHS worst for
data breaches.”</span><span style="font-size: 9pt;"><o:p></o:p></span></span></div>
<div>
<!--[if !supportFootnotes]--><br clear="all" />
<hr align="left" size="1" width="33%" />
<!--[endif]-->
<div id="ftn1">
<div class="MsoFootnoteText">
<a href="file:///F:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2030_09_2011%20v1%20Social.docx#_ftnref1" name="_ftn1" title=""><span class="MsoFootnoteReference"><!--[if !supportFootnotes]--><span class="MsoFootnoteReference"><span style="font-family: "Arial","sans-serif"; font-size: 10.0pt; line-height: 115%; mso-ansi-language: EN-GB; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">[1]</span></span><!--[endif]--></span></a>
<span style="font-size: 8.0pt; mso-bidi-font-family: Arial;">The Academy of Medical
Sciences: A new pathway for the regulation and governance of health research</span></div>
</div>
<div id="ftn2">
<div class="MsoFootnoteText">
<a href="file:///F:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2030_09_2011%20v1%20Social.docx#_ftnref2" name="_ftn2" title=""><span class="MsoFootnoteReference"><!--[if !supportFootnotes]--><span class="MsoFootnoteReference"><span style="font-family: "Arial","sans-serif"; font-size: 10.0pt; line-height: 115%; mso-ansi-language: EN-GB; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">[2]</span></span><!--[endif]--></span></a>
<span style="font-size: 8.0pt;">Ibid.</span></div>
</div>
<div id="ftn3">
<div class="MsoFootnoteText">
<a href="file:///F:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2030_09_2011%20v1%20Social.docx#_ftnref3" name="_ftn3" title=""><span class="MsoFootnoteReference"><!--[if !supportFootnotes]--><span class="MsoFootnoteReference"><span style="font-family: "Arial","sans-serif"; font-size: 10.0pt; line-height: 115%; mso-ansi-language: EN-GB; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">[3]</span></span><!--[endif]--></span></a>
<span style="font-size: 8.0pt;">Ibid.</span></div>
</div>
<div id="ftn4">
<div class="MsoFootnoteText">
<a href="file:///F:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2030_09_2011%20v1%20Social.docx#_ftnref4" name="_ftn4" title=""><span class="MsoFootnoteReference"><span style="font-size: 8.0pt; mso-bidi-font-family: Arial;"><!--[if !supportFootnotes]--><span class="MsoFootnoteReference"><span style="font-family: "Arial","sans-serif"; font-size: 8.0pt; line-height: 115%; mso-ansi-language: EN-GB; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">[4]</span></span><!--[endif]--></span></span></a><span style="font-size: 8.0pt; mso-bidi-font-family: Arial;"> Ministry of Justice: Data
Sharing Review, 2008 [Richard Thomas, Information Commissioner; Dr Mark Walport]<o:p></o:p></span></div>
</div>
<div id="ftn5">
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0cm;">
<a href="file:///F:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2030_09_2011%20v1%20Social.docx#_ftnref5" name="_ftn5" title=""><span class="MsoFootnoteReference"><!--[if !supportFootnotes]--><span class="MsoFootnoteReference"><span style="font-family: "Arial","sans-serif"; font-size: 10.0pt; line-height: 115%; mso-ansi-language: EN-GB; mso-bidi-font-family: "Times New Roman"; mso-bidi-font-size: 11.0pt; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">[5]</span></span><!--[endif]--></span></a> <a href="http://www.eweekeurope.co.uk/news/public-sector-clueless-on-secure-data-transfer-7635"><span style="font-size: 8.0pt; line-height: 115%; mso-bidi-font-family: Arial;">http://www.eweekeurope.co.uk/news/public-sector-clueless-on-secure-data-transfer-7635</span></a><span style="font-size: 9.0pt; line-height: 115%; mso-bidi-font-family: Arial;"><o:p></o:p></span></div>
</div>
<div id="ftn6">
<div class="MsoFootnoteText">
<a href="file:///F:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2030_09_2011%20v1%20Social.docx#_ftnref6" name="_ftn6" title=""><span class="MsoFootnoteReference"><!--[if !supportFootnotes]--><span class="MsoFootnoteReference"><span style="font-family: "Arial","sans-serif"; font-size: 10.0pt; line-height: 115%; mso-ansi-language: EN-GB; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">[6]</span></span><!--[endif]--></span></a>
<a href="http://www.bbc.co.uk/news/10089066"><span style="font-size: 8.0pt;">http://www.bbc.co.uk/news/10089066</span></a></div>
</div>
<div id="ftn7">
<div class="MsoFootnoteText">
<a href="file:///F:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2030_09_2011%20v1%20Social.docx#_ftnref7" name="_ftn7" title=""><span class="MsoFootnoteReference"><!--[if !supportFootnotes]--><span class="MsoFootnoteReference"><span style="font-family: "Arial","sans-serif"; font-size: 10.0pt; line-height: 115%; mso-ansi-language: EN-GB; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">[7]</span></span><!--[endif]--></span></a>
Ibid.</div>
</div>
</div>Bioinformatic5http://www.blogger.com/profile/05450325528399173016noreply@blogger.com0tag:blogger.com,1999:blog-5688296140002460459.post-67824361079459918672012-02-16T09:01:00.000-08:002012-02-16T09:24:25.117-08:00Patients' views on participating in medical research - Part 1: AttitudesWhile we are still working on our 'Funders' Policies on data sharing' article we decided to post here a summary of recent work on patients' attitudes to participating in medical research - again, a primer on the current state of play in clinical research in the UK selecting choice elements from recent reports; check out the footnotes for interesting sources to follow up. Part 2 will cover Engagement and Participation and will be followed by a piece on medics' attitudes to research. As always, let us know what you think - if there are more recent / complete / credible studies out there which draw different conclusions, let us know!<br />
<br />
We also came across a tweet today from Simon Denegri <a href="http://simondenegri.com/2012/02/16/nhs-research-up-close-and-personal-research-people-site-tells-the-stories-behind-the-story/">linking via his blog</a> to <a href="http://www.crncc.nihr.ac.uk/about_us/research_people/">an NIHR site containing video testimonials of the experiences of patients, nurses and doctors taking part in or working on clinical trials</a> which is worth a look too. Apologies for the bizarre formatting of the bullet-points below!<br />
<h3>
<br /></h3>
<h3>
<span lang="EN-GB"><a href="http://www.blogger.com/blogger.g?blogID=5688296140002460459&pli=1" name="_Toc303676846">Attitudes</a></span><span lang="EN-GB"><o:p></o:p></span></h3>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span lang="EN-GB" style="font-size: 9pt;">The following
bullet points are extracted from the text of the re</span><span lang="EN-GB" style="font-size: 9pt;">port “The Use of Personal
Health Information in Medical Research General Public Consultation” which
presents the the findings of a programme of research carried out among the
general public by Ipsos MORI on behalf of the <i>Medical Research Council </i>(MRC)
published in July 2007 with the aim of “Identifying public concerns and
misconceptions surrounding the secondary use of personal health information for
medical research.”</span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span lang="EN-GB" style="font-size: 9pt;">In summary they found that
there was low public awareness of medical research, that the public were in
general supportive of research when informed about it and when they felt in
control of their data – but continue to have reservations about privacy:<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoListParagraphCxSpFirst" style="margin-bottom: 0.0001pt; text-indent: -0.25in;">
<span lang="EN-GB" style="font-family: Symbol; font-size: 9pt;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span lang="EN-GB" style="font-size: 9pt;">“The advantages of medical research are seen by the
public to far outweigh the disadvantages. Seven in ten feel the merits of
research outweigh the disadvantages, compared to only 6% who say the opposite.”<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoListParagraphCxSpLast" style="margin-bottom: 0.0001pt; text-indent: -0.25in;">
<span lang="EN-GB" style="font-family: Symbol; font-size: 9pt;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span lang="EN-GB" style="font-size: 9pt;">The qualitative phase of this consultation showed
that there was little public awareness and understanding of medical research
(and thus the use of secondary health information for medical research
purposes), who undertakes it and to what ends.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoListParagraphCxSpFirst" style="margin-bottom: 0.0001pt; text-indent: -0.25in;">
<span lang="EN-GB" style="font-family: Symbol; font-size: 9pt;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span lang="EN-GB" style="font-size: 9pt;">“The workshops indicate that, if the public is informed<b> </b>about what medical
research entails, they are generally positive towards it. Communications are key to building
public trust… Key to effective
communication on the subject is the need to keep terminology simple.”<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle">
<br /></div>
<div class="MsoListParagraphCxSpLast" style="margin-bottom: 0.0001pt; text-indent: -0.25in;">
<span lang="EN-GB" style="font-family: Symbol; font-size: 9pt;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span lang="EN-GB" style="font-size: 9pt;">The quantitative phase of the research showed that
“Just over a third (34%) cannot think of any associations with the phrase <i>personal health information</i>, which
indicates fairly low awareness for the MRC to address.”<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoListParagraph" style="margin-bottom: 0.0001pt; text-indent: -0.25in;">
<span lang="EN-GB" style="font-family: Symbol; font-size: 9pt;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span lang="EN-GB" style="font-size: 9pt;">“Perceptions of who, or which organisations people
feel would hold personal health information focus mainly around the health
service [GPs, hospital doctors and the NHS]. Medical researchers (working in
any capacity) are mentioned by less than 1% of the general public.”<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoListParagraphCxSpFirst" style="margin-bottom: 0.0001pt; text-indent: -0.25in;">
<span lang="EN-GB" style="font-family: Symbol; font-size: 9pt;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span lang="EN-GB" style="font-size: 9pt;">“If the public feels in control of their
information and its potential uses, then they are likely to be more inclined to
allow their personal health information to be used for medical research
purposes…The qualitative research shows that the main public concerns are over
organisations sharing this information, particularly for commercial gain….
Medical researchers working in the public sector i.e. for Government and
universities (both trusted by 11%) are more trusted than their counterparts
working for private companies (4%). The private sector features prominently
among the least trusted organisations where personal health information is
concerned.”<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle">
<br /></div>
<div class="MsoListParagraphCxSpLast" style="margin-bottom: 0.0001pt; text-indent: -0.25in;">
<span lang="EN-GB" style="font-family: Symbol; font-size: 9pt;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span lang="EN-GB" style="font-size: 9pt;">“While most see the benefit of personal health
information being used for medical research purposes, the very same people can
hold reservations over the implications for privacy…. The most common reason
for being unlikely or certain not to allow personal health information to be
used for medical research purposes is concern
over privacy<b> </b>(28%).”<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoListParagraphCxSpFirst" style="margin-bottom: 0.0001pt; text-indent: -0.25in;">
<span lang="EN-GB" style="font-family: Symbol; font-size: 9pt;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span lang="EN-GB" style="font-size: 9pt;">“The two key pillars of anonymity and consent
feature highly in the debate over what information should be available, to
whom, and in what circumstances. These two themes are central to building
trust.”<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle">
<br /></div>
<div class="MsoListParagraphCxSpLast" style="margin-bottom: 0.0001pt; text-indent: -0.25in;">
<span lang="EN-GB" style="font-family: Symbol; font-size: 9pt;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span lang="EN-GB" style="font-size: 9pt;">“The vast majority (87%) trust GPs to have access to their personal health information, and
over half trust other health
professionals – such as consultants or hospital doctors (59%).”<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoListParagraphCxSpFirst" style="margin-bottom: 0.0001pt; text-indent: -0.25in;">
<span lang="EN-GB" style="font-family: Symbol; font-size: 9pt;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span lang="EN-GB" style="font-size: 9pt;">The public needs “a human face to reassure them and
discuss the issues around consent and confidentiality with them. Health
professionals in general, and GPs in particular, are the most trusted to
perform this role. For many, the GP’s surgery is the most frequent point of
contact on health issues and it would seem sensible to use this as one location
for dissemination of information about personal health information for medical
research purposes.”<a href="file:///G:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2030_09_2011%20v1%20Social.docx#_ftn1" name="_ftnref1" title=""><span class="MsoFootnoteReference"><span class="MsoFootnoteReference"><span lang="EN-GB" style="font-family: Arial, sans-serif; font-size: 9pt; line-height: 115%;">[1]</span></span></span></a><b><o:p></o:p></b></span></div>
<div class="MsoListParagraphCxSpLast">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span lang="EN-GB" style="font-size: 9pt;">The Academy of Medical
Sciences presented a review of public engagement on the use of patient data,
summarising several reports thus:<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoListParagraphCxSpFirst" style="margin-bottom: 0.0001pt; text-indent: -0.25in;">
<span lang="EN-GB" style="font-family: Symbol; font-size: 9pt;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><b><span lang="EN-GB" style="font-size: 9pt;">NHS Connecting
for Health</span></b><span lang="EN-GB" style="font-size: 9pt;"> – Using patient information in the NHS (2009).98 This report found that
the 96 participants were generally happy for their data to be used in research
as long as anonymity was ensured and they were approached by someone they knew
and trusted, such as their GP.<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoListParagraphCxSpLast" style="margin-bottom: 0.0001pt; text-indent: -0.25in;">
<span lang="EN-GB" style="font-family: Symbol; font-size: 9pt;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><b><span lang="EN-GB" style="font-size: 9pt;">Royal Academy of
Engineering</span></b><span lang="EN-GB" style="font-size: 9pt;"> –Young people’s views on the development and use of Electronic Patient
Records (201099) Of 3,000 young people surveyed, most were not against the idea
of anonymised data being used in medical research; 50% said that they would
want to be asked for consent each time researchers used their anonymous record.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoListParagraphCxSpFirst" style="margin-bottom: 0.0001pt; text-indent: -0.25in;">
<span lang="EN-GB" style="font-family: Symbol; font-size: 9pt;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span lang="EN-GB" style="font-size: 9pt;">New Economics Foundation - Exploring public views
on personal electronic health records (October 2010100) Surveyed 6000 people
and found: that 57% of adults and 67% of young people were enthusiastic about
the benefits of switching to digital patient records; and that patient consent
would be essential for using identifiable data for research.<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-bottom: 0.0001pt; text-indent: -0.25in;">
<span lang="EN-GB" style="font-family: Symbol; font-size: 9pt;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span lang="EN-GB" style="font-size: 9pt;">Wellcome Trust/University of Surrey – Public
Attitudes to Research Governance (2006). Based on interviews and focus groups
with 89 people; the report found participants were willing to provide personal
data for biomedical research providing its use had been explained to them.
Concerns remained over whether promises of anonymity and security could be
fully relied on.<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-bottom: 0.0001pt; text-indent: -0.25in;">
<span lang="EN-GB" style="font-family: Symbol; font-size: 9pt;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span lang="EN-GB" style="font-size: 9pt;">MRC/Ipsos MORI - The Use of Personal Health
Information in Medical Research (2007). Interviewed a sample of 2,106 UK adults
and found that 69% were ‘likely’ to allow the data to be used for health
research purposes<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoListParagraphCxSpLast" style="margin-bottom: 0.0001pt; text-indent: -0.25in;">
<span lang="EN-GB" style="font-family: Symbol; font-size: 9pt;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span lang="EN-GB" style="font-size: 9pt;">Academy of Medical Sciences - Personal data for
public good: using health information in medical research (2006). Consulted
with a wide range of patient representatives and found research using personal
data was strongly supported. Public engagement was identified as one of the
most important tasks in developing future arrangements for appropriate
governance for the use of health information in health research.<a href="file:///G:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2030_09_2011%20v1%20Social.docx#_ftn2" name="_ftnref2" title=""><span class="MsoFootnoteReference"><span class="MsoFootnoteReference"><span lang="EN-GB" style="font-family: Arial, sans-serif; font-size: 9pt; line-height: 115%;">[2]</span></span></span></a><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB" style="font-size: 9pt; line-height: 115%;">Another 2007 report, a survey of literature
covering public and professional attitudes to privacy of healthcare data
commissioned by the General Medical Council and conducted by Cambridge Health
Informatics, came to the following conclusions:<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpFirst" style="mso-list: l0 level1 lfo4; text-indent: -.25in;">
<span lang="EN-GB" style="font-family: Symbol; font-size: 9pt; line-height: 115%;">·<span style="font-family: 'Times New Roman'; font-size: 7pt; line-height: normal;">
</span></span><span lang="EN-GB" style="font-size: 9pt; line-height: 115%;">Assessment of public attitudes is
dependent on how the topic is framed. People will express concerns if questioned
about ‘concerns’, but will readily trade these ‘concerns’ for health or other benefits, even altruistic ones.<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo4; text-indent: -.25in;">
<span lang="EN-GB" style="font-family: Symbol; font-size: 9pt; line-height: 115%;">·<span style="font-family: 'Times New Roman'; font-size: 7pt; line-height: normal;">
</span></span><span lang="EN-GB" style="font-size: 9pt; line-height: 115%;">‘Real world’ choices can be very
different (and constrained) from those offered in opinion surveys where costs
and trade-offs may not appear.<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo4; text-indent: -.25in;">
<span lang="EN-GB" style="font-family: Symbol; font-size: 9pt; line-height: 115%;">·<span style="font-family: 'Times New Roman'; font-size: 7pt; line-height: normal;">
</span></span><span lang="EN-GB" style="font-size: 9pt; line-height: 115%;">Public attitudes are not uniform
and the surveys suggest that they are often either ill-informed or unformed (or
sometimes formed during an investigation or discussion).<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo4; text-indent: -.25in;">
<span lang="EN-GB" style="font-family: Symbol; font-size: 9pt; line-height: 115%;">·<span style="font-family: 'Times New Roman'; font-size: 7pt; line-height: normal;">
</span></span><span lang="EN-GB" style="font-size: 9pt; line-height: 115%;">Attitudes among the public vary
from the completely unconcerned to a small proportion of the public that has
strong views on privacy, either from a sense of a ‘right to privacy’ or because
of some sensitive episode in the past that they wish to protect. The majority
of the public seem to rely on trust in clinicians and the healthcare system.<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo4; text-indent: -.25in;">
<span lang="EN-GB" style="font-family: Symbol; font-size: 9pt; line-height: 115%;">·<span style="font-family: 'Times New Roman'; font-size: 7pt; line-height: normal;">
</span></span><span lang="EN-GB" style="font-size: 9pt; line-height: 115%;">It is clear that the public (and
to some degree the professions) are unclear on the potential roles of medical
records in modern healthcare.<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo4; text-indent: -.25in;">
<span lang="EN-GB" style="font-family: Symbol; font-size: 9pt; line-height: 115%;">·<span style="font-family: 'Times New Roman'; font-size: 7pt; line-height: normal;">
</span></span><span lang="EN-GB" style="font-size: 9pt; line-height: 115%;">The public would like a choice in
the use of their records, but there is little hard evidence about what arrangement
of choices the public would generally prefer – or whether there are radically
different opinions on this.<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpLast" style="mso-list: l0 level1 lfo4; text-indent: -.25in;">
<span lang="EN-GB" style="font-family: Symbol; font-size: 9pt; line-height: 115%;">·<span style="font-family: 'Times New Roman'; font-size: 7pt; line-height: normal;">
</span></span><span lang="EN-GB" style="font-size: 9pt; line-height: 115%;">The public appear to be becoming
more comfortable with computer technology, which may reduce fears over privacy,
but with increasing expectations over security and choice about access to their
records.<a href="file:///G:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2030_09_2011%20v1%20Social.docx#_ftn3" name="_ftnref3" title=""><span class="MsoFootnoteReference"><span class="MsoFootnoteReference"><span lang="EN-GB" style="font-family: Arial, sans-serif; font-size: 9pt; line-height: 115%;">[3]</span></span></span></a><o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB" style="font-size: 9pt; line-height: 115%;">Of note these authors contend that “Generally much
of healthcare policy in relation to the privacy of healthcare data has been
based on historic ethical and legal considerations together with financial
practicalities rather than on an evidence-base of what individuals would want
or expect. This has been, in part, been
due to a perceived lack of understanding by the public at large (and many
professionals too) of how medical records are actually used and shared within
the healthcare system as a whole: this perception means that they have rarely
been asked in any formal consultative way.”<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-GB" style="font-size: 9pt; line-height: 115%;">They also contend, however, that “Establishing
public concerns about the privacy of health data poses problems because, from
the few surveys that have been performed, it appears that only a small
proportion of the public have a strong opinion and fewer still have an
understanding of the complex issues that need to be weighed up when arriving at
an opinion.”<a href="file:///G:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2030_09_2011%20v1%20Social.docx#_ftn4" name="_ftnref4" title=""><span class="MsoFootnoteReference"><span class="MsoFootnoteReference"><span lang="EN-GB" style="font-family: Arial, sans-serif; font-size: 9pt; line-height: 115%;">[4]</span></span></span></a><o:p></o:p></span></div>
<div>
<br />
<hr align="left" size="1" width="33%" />
<div id="ftn1">
<div class="MsoFootnoteText">
<a href="file:///G:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2030_09_2011%20v1%20Social.docx#_ftnref1" name="_ftn1" title=""><span class="MsoFootnoteReference"><span lang="EN-GB"><span class="MsoFootnoteReference"><span lang="EN-GB" style="font-family: Arial, sans-serif; font-size: 10pt; line-height: 115%;">[1]</span></span></span></span></a><span lang="EN-GB" style="font-size: 8pt;"> Ipsos MORI on behalf of the Medical Research
Council: The Use of Personal Health Information in Medical Research General
Public Consultation [2007]</span><span lang="EN-GB"><o:p></o:p></span></div>
</div>
<div id="ftn2">
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<a href="file:///G:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2030_09_2011%20v1%20Social.docx#_ftnref2" name="_ftn2" title=""><span class="MsoFootnoteReference"><span lang="EN-GB"><span class="MsoFootnoteReference"><span lang="EN-GB" style="font-family: Arial, sans-serif; font-size: 10pt; line-height: 115%;">[2]</span></span></span></span></a><span lang="EN-GB"> </span><span lang="EN-GB">Ibid.
Full citations for these reports are:</span><span lang="EN-GB" style="font-family: Verdana, sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span lang="EN-GB" style="font-family: Verdana, sans-serif; font-size: 8pt;">UK Clinical Research Collaboration (2010). Attitudes and
awareness amongst General Practioners (GPs) and<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span lang="EN-GB" style="font-family: Verdana, sans-serif; font-size: 8pt;">patients about the use of patient data in research – a
study by the UK Clinical Research Collaboration Board<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span lang="EN-GB" style="font-family: Verdana, sans-serif; font-size: 8pt;">Sub-Group on Public Awareness. UCKRC, London.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span lang="EN-GB" style="font-family: Verdana, sans-serif; font-size: 8pt;">NHS Connecting for Health (2009). Using patient
information in the NHS.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span lang="EN-GB" style="color: blue; font-family: Verdana, sans-serif; font-size: 8pt;">http://www.connectingforhealth.nhs.uk/engagement/public/consultations/hsreport.pdf<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span lang="EN-GB" style="font-family: Verdana, sans-serif; font-size: 8pt;">Royal Academy of Engineering (2010).Privacy and prejudice:
young people’s views on the development and<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span lang="EN-GB" style="font-family: Verdana, sans-serif; font-size: 8pt;">use of electronic patient records.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span lang="EN-GB" style="color: blue; font-family: Verdana, sans-serif; font-size: 8pt;">http://www.raeng.org.uk/news/publications/list/reports/Privacy_and_Prejudice_EPR_views.pdf<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span lang="EN-GB" style="font-family: Verdana, sans-serif; font-size: 8pt;">New Economics Foundation (2010). Who sees what? Exploring
public views on personal electronic health<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span lang="EN-GB" style="font-family: Verdana, sans-serif; font-size: 8pt;">records.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span lang="EN-GB" style="color: blue; font-family: Verdana, sans-serif; font-size: 8pt;">http://www.neweconomics.org/sites/neweconomics.org/files/Who_Sees_What.pdf<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span lang="EN-GB" style="font-family: Verdana, sans-serif; font-size: 8pt;">Wellcome Trust/University of Surrey (2006) Public
attitudes to research governance: a qualitative study in a<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span lang="EN-GB" style="font-family: Verdana, sans-serif; font-size: 8pt;">deliberative context.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span lang="EN-GB" style="color: blue; font-family: Verdana, sans-serif; font-size: 8pt;">http://www.wellcome.ac.uk/stellent/groups/corporatesite/@policy_communications/documents/web_document<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span lang="EN-GB" style="color: blue; font-family: Verdana, sans-serif; font-size: 8pt;">/wtx038443.pdf</span><span lang="EN-GB"><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span lang="EN-GB" style="font-family: Verdana, sans-serif; font-size: 8pt;">Medical Research Council/Ipsos MORI (2007). The use of
personal health information in medical research.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span lang="EN-GB" style="color: blue; font-family: Verdana, sans-serif; font-size: 8pt;">http://www.mrc.ac.uk/consumption/idcplg?IdcService=GET_FILE&dID=10983&dDocName=MRC003810&allowI<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span lang="EN-GB" style="color: blue; font-family: Verdana, sans-serif; font-size: 8pt;">nterrupt=1<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span lang="EN-GB" style="font-family: Verdana, sans-serif; font-size: 8pt;">Academy of Medical Sciences (2006). Personal data for
public good: using health information in medical<o:p></o:p></span></div>
<div class="MsoFootnoteText">
<span lang="EN-GB" style="font-family: Verdana, sans-serif; font-size: 8pt;">research. </span><span lang="EN-GB" style="color: blue; font-family: Verdana, sans-serif; font-size: 8pt;">http://www.acmedsci.ac.uk/download.php?file=/images/publication/Personal.pdf</span><span lang="EN-GB"><o:p></o:p></span></div>
</div>
<div id="ftn3">
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<a href="file:///G:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2030_09_2011%20v1%20Social.docx#_ftnref3" name="_ftn3" title=""><span class="MsoFootnoteReference"><span lang="EN-GB"><span class="MsoFootnoteReference"><span lang="EN-GB" style="font-family: Arial, sans-serif; font-size: 10pt; line-height: 115%;">[3]</span></span></span></span></a><span lang="EN-GB"> </span><span lang="EN-GB" style="font-size: 8pt;">Cambridge Health Informatics report for the
General Medical Council: Public and Professional attitudes to privacy of
healthcare data - A Survey of the Literature; </span><span lang="EN-GB"><a href="http://www.gmc-uk.org/GMC_Privacy_Attitudes_Final_Report_with_Addendum.pdf_27007284.pdf"><span style="font-size: 8pt;">http://www.gmc-uk.org/GMC_Privacy_Attitudes_Final_Report_with_Addendum.pdf_27007284.pdf</span></a></span><span lang="EN-GB" style="font-size: 8pt;"><o:p></o:p></span></div>
</div>
<div id="ftn4">
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<a href="file:///G:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2030_09_2011%20v1%20Social.docx#_ftnref4" name="_ftn4" title=""><span class="MsoFootnoteReference"><span lang="EN-GB"><span class="MsoFootnoteReference"><span lang="EN-GB" style="font-family: Arial, sans-serif; font-size: 10pt; line-height: 115%;">[4]</span></span></span></span></a><span lang="EN-GB"> </span><span lang="EN-GB" style="font-size: 8pt;">Cambridge Health Informatics report for the
General Medical Council: Public and Professional attitudes to privacy of
healthcare data - A Survey of the Literature; </span><span lang="EN-GB"><a href="http://www.gmc-uk.org/GMC_Privacy_Attitudes_Final_Report_with_Addendum.pdf_27007284.pdf"><span style="font-size: 8pt;">http://www.gmc-uk.org/GMC_Privacy_Attitudes_Final_Report_with_Addendum.pdf_27007284.pdf</span></a></span><span lang="EN-GB" style="font-size: 8pt;"><o:p></o:p></span></div>
</div>
</div>Bioinformatic5http://www.blogger.com/profile/05450325528399173016noreply@blogger.com0tag:blogger.com,1999:blog-5688296140002460459.post-74645834698407245102012-02-06T02:28:00.000-08:002012-02-06T02:28:39.129-08:00Data Sharing - the MRC Data Support Service and Research Data GatewayWhilst still working on an analysis of research funders' policies with regard to data sharing we ought to update you on the progress made by the MRC on their Data Support Service. We <a href="http://biomedres.blogspot.com/2011/05/catalogues-of-clinical-data-mrc-data.html">posted on this in May 2011</a> and certainly by late last year had not heard anything further but are now delighted to see that the MRC have a few new pages indicating that phase II ( "<span style="background-color: white; font-family: Verdana, 'Gill sans', Arial, Helvetica, sans-serif; font-size: 12px; line-height: 18px; text-align: left;">develop[ing] a prototype online gateway for the discovery of MRC-funded population and patient studies and their variables with a Directory of MRC population cohort datasets")</span><span style="background-color: white; font-family: Verdana, 'Gill sans', Arial, Helvetica, sans-serif; line-height: 18px; text-align: left;"> </span>
has completed and that phase III is underway about which you can read more on their site from whence these bullet points:<div>
<br /></div>
<div>
<ul style="background-color: white; clear: both; font-family: Verdana, 'Gill sans', Arial, Helvetica, sans-serif; font-size: 12px; list-style-image: initial; list-style-position: initial; list-style-type: none; margin-bottom: 10px; margin-left: 10px; margin-right: 10px; margin-top: 10px; padding-bottom: 0px; padding-left: 24px; padding-right: 0px; padding-top: 0px; text-align: left;">
<li style="background-attachment: initial; background-clip: initial; background-color: initial; background-image: url(http://www.mrc.ac.uk/consumption/groups/secure/documents/ss_image/smallArrow_lev2.gif); background-origin: initial; background-position: 0px 7px; background-repeat: no-repeat no-repeat; clear: both; display: block; float: left; font-size: 1em; line-height: 1.5em; list-style-image: initial; list-style-position: initial; list-style-type: none; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-left: 10px; text-align: left; width: 439px;">[Phase III is] Developing <a href="http://www.mrc.ac.uk/Ourresearch/Ethicsresearchguidance/datasharing/Policy/PHSPolicy/index.htm" style="background-image: none; color: #9a044b; font-size: 1em; padding-right: 0px;" target="_top"><u>policy guidance</u></a> for population and patient studies on sharing of research data and on data management planning, with expert input and in line with policies of other funder to ensure harmonised principles</li>
<li style="background-attachment: initial; background-clip: initial; background-color: initial; background-image: url(http://www.mrc.ac.uk/consumption/groups/secure/documents/ss_image/smallArrow_lev2.gif); background-origin: initial; background-position: 0px 7px; background-repeat: no-repeat no-repeat; clear: both; display: block; float: left; font-size: 1em; line-height: 1.5em; list-style-image: initial; list-style-position: initial; list-style-type: none; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-left: 10px; text-align: left; width: 439px;">Launching the prototype MRC Research Data Gateway to facilitate the discovery of research data, metadata and documentation</li>
<li style="background-attachment: initial; background-clip: initial; background-color: initial; background-image: url(http://www.mrc.ac.uk/consumption/groups/secure/documents/ss_image/smallArrow_lev2.gif); background-origin: initial; background-position: 0px 7px; background-repeat: no-repeat no-repeat; clear: both; display: block; float: left; font-size: 1em; line-height: 1.5em; list-style-image: initial; list-style-position: initial; list-style-type: none; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-left: 10px; text-align: left; width: 439px;">Planning and developing a sustainable <a href="http://www.mrc.ac.uk/Ourresearch/Ethicsresearchguidance/datasharing/Gateway/index.htm" style="background-image: none; color: #9a044b; font-size: 1em; padding-right: 0px;" target="_top"><u>MRC Research Data Gateway</u></a>and Directory of Population and Patient Research Data, with data management toolkit to support data sharing</li>
<li style="background-attachment: initial; background-clip: initial; background-color: initial; background-image: url(http://www.mrc.ac.uk/consumption/groups/secure/documents/ss_image/smallArrow_lev2.gif); background-origin: initial; background-position: 0px 7px; background-repeat: no-repeat no-repeat; clear: both; display: block; float: left; font-size: 1em; line-height: 1.5em; list-style-image: initial; list-style-position: initial; list-style-type: none; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-left: 10px; text-align: left; width: 439px;">Engaging further cohort studies to contribute metadata to the Directory of Population and Patient Research Data</li>
<li style="background-attachment: initial; background-clip: initial; background-color: initial; background-image: url(http://www.mrc.ac.uk/consumption/groups/secure/documents/ss_image/smallArrow_lev2.gif); background-origin: initial; background-position: 0px 7px; background-repeat: no-repeat no-repeat; clear: both; display: block; float: left; font-size: 1em; line-height: 1.5em; list-style-image: initial; list-style-position: initial; list-style-type: none; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-left: 10px; text-align: left; width: 439px;">Growing a data managers network with a programme of value-adding activities, to enable the preceding objectives</li>
</ul>
<div style="text-align: left;">
<span style="font-family: Verdana, 'Gill sans', Arial, Helvetica, sans-serif;"><span style="font-size: 12px; line-height: 18px;"><br /></span></span></div>
<div style="text-align: left;">
<span style="font-family: Verdana, 'Gill sans', Arial, Helvetica, sans-serif;"><span style="font-size: 12px; line-height: 18px;"><br /></span></span></div>
<div style="text-align: left;">
<span style="font-family: Verdana, 'Gill sans', Arial, Helvetica, sans-serif;"><span style="font-size: 12px; line-height: 18px;"><br /></span></span></div>
<div style="text-align: left;">
<span style="font-family: Verdana, 'Gill sans', Arial, Helvetica, sans-serif;"><span style="font-size: 12px; line-height: 18px;"><br /></span></span></div>
<div style="text-align: left;">
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<span style="text-align: -webkit-auto;">We're particularly interested in the <a href="http://www.mrc.ac.uk/Ourresearch/Ethicsresearchguidance/datasharing/Gateway/index.htm">Research Data Gateway</a><span id="goog_522696851"></span><span id="goog_522696852"></span><a href="http://www.blogger.com/"></a> given our recent experience developing resource discovery portals (e.g. </span><a href="http://ncri-onix.org.uk/portal/#S1">ONIX</a>). The information available for each study accessible through the gateway is given below - we're not sure how to interpret 'Variable' and can't help but reflect on the lost opportunity of the now non-current <a href="http://www.icapp.nhs.uk/docdat/Search.aspx">DoCDat catalogue of clinical databases</a> which provided very rich metadata on its resources including qualitative analyses - for more info on that see our <a href="http://biomedres.blogspot.com/2011/07/clinical-informatics-catalogues-of.html">blog post:</a></div>
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<li style="background-attachment: initial; background-clip: initial; background-color: initial; background-image: url(http://www.mrc.ac.uk/consumption/groups/secure/documents/ss_image/smallArrow_lev2.gif); background-origin: initial; background-position: 0px 7px; background-repeat: no-repeat no-repeat; clear: both; display: block; float: left; font-size: 1em; line-height: 1.5em; list-style-image: initial; list-style-position: initial; list-style-type: none; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-left: 10px; text-align: left; width: 439px;"><b>Study</b>: a programme of research whereby data from and about individuals representing a population group are collected and analysed</li>
<li style="background-attachment: initial; background-clip: initial; background-color: initial; background-image: url(http://www.mrc.ac.uk/consumption/groups/secure/documents/ss_image/smallArrow_lev2.gif); background-origin: initial; background-position: 0px 7px; background-repeat: no-repeat no-repeat; clear: both; display: block; float: left; font-size: 1em; line-height: 1.5em; list-style-image: initial; list-style-position: initial; list-style-type: none; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-left: 10px; text-align: left; width: 439px;"><b>Time period</b>: a wave, sweep, time period or time point within a longitudinal study</li>
<li style="background-attachment: initial; background-clip: initial; background-color: initial; background-image: url(http://www.mrc.ac.uk/consumption/groups/secure/documents/ss_image/smallArrow_lev2.gif); background-origin: initial; background-position: 0px 7px; background-repeat: no-repeat no-repeat; clear: both; display: block; float: left; font-size: 1em; line-height: 1.5em; list-style-image: initial; list-style-position: initial; list-style-type: none; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-left: 10px; text-align: left; width: 439px;"><b>Data collection event</b>: a survey, screening, interview series or clinic, being the event through which research data were collected; there can be various data collection events within a phase</li>
<li style="background-attachment: initial; background-clip: initial; background-color: initial; background-image: url(http://www.mrc.ac.uk/consumption/groups/secure/documents/ss_image/smallArrow_lev2.gif); background-origin: initial; background-position: 0px 7px; background-repeat: no-repeat no-repeat; clear: both; display: block; float: left; font-size: 1em; line-height: 1.5em; list-style-image: initial; list-style-position: initial; list-style-type: none; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-left: 10px; text-align: left; width: 439px;"><b>Variable</b>: each data variable belongs to a particular study, phase and data collection event</li>
<li style="background-attachment: initial; background-clip: initial; background-color: initial; background-image: url(http://www.mrc.ac.uk/consumption/groups/secure/documents/ss_image/smallArrow_lev2.gif); background-origin: initial; background-position: 0px 7px; background-repeat: no-repeat no-repeat; clear: both; display: block; float: left; font-size: 1em; line-height: 1.5em; list-style-image: initial; list-style-position: initial; list-style-type: none; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-left: 10px; text-align: left; width: 439px;"><b>Contact</b>: point of contact for a study</li>
<li style="background-attachment: initial; background-clip: initial; background-color: initial; background-image: url(http://www.mrc.ac.uk/consumption/groups/secure/documents/ss_image/smallArrow_lev2.gif); background-origin: initial; background-position: 0px 7px; background-repeat: no-repeat no-repeat; clear: both; display: block; float: left; font-size: 1em; line-height: 1.5em; list-style-image: initial; list-style-position: initial; list-style-type: none; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-left: 10px; text-align: left; width: 439px;"><b>Resource</b>: an information item for a study, e.g. a questionnaire form, report, etc.</li>
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</div>Bioinformatic5http://www.blogger.com/profile/05450325528399173016noreply@blogger.com0tag:blogger.com,1999:blog-5688296140002460459.post-9143941047520860022012-01-30T05:44:00.000-08:002012-02-02T06:00:41.038-08:00Data sharing in research - cultural and technical barriers in Life Sciences and Public Health - Part 2 - BarriersThe second section of our review of attitudes to data sharing in Life Sciences and Public Health was due to look at policies introduced by research funders to oblige researchers to make their data accessible to the community, however, there is more to be said on this than we have currently committed to bytes or paper.<br />
<br />
Thus we'll jump ahead here to our section on barriers to data-sharing and aim to get the section on funders' policies to you within the week...<br />
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Just a reminder that it's meant to serve as a 'primer' aggregating analyses from the last few years in this area and pointing you to the original articles and as such references other publications pretty heavily - so do check out the footnotes if you want to explore further.<br />
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<a href="http://www.blogger.com/blogger.g?blogID=5688296140002460459" name="_Toc303676844">Barriers – incentives and expertise</a></h3>
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<span style="font-size: 9pt;">Discussions of this subject highlight the
lack of active incentives (rather than obligations) to share data: “the lack of
explicit career rewards, and in particular the perceived failure of the
Research Assessment Exercise (RAE) explicitly to recognise and reward the
creating and sharing of datasets – as distinct from the publication of papers -
are major disincentives.”<a href="file:///I:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2030_09_2011%20v1%20Social.docx#_ftn1" name="_ftnref1" title=""><span class="MsoFootnoteReference"><span class="MsoFootnoteReference"><span style="font-family: Arial, sans-serif; font-size: 9pt; line-height: 115%;">[1]</span></span></span></a><o:p></o:p></span></div>
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<span style="font-size: 9pt;">As mentioned above when looking at Social and
Public Health Sciences the Research Intelligence Network found “found scant
evidence of researchers wanting to publish datasets. Typically researchers will
request data from one or more publicly-available datasets and they will
undertake analysis. Often this process leads to the creation of new, derived
datasets but these tend not to find their way to the public domain.”<a href="file:///I:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2030_09_2011%20v1%20Social.docx#_ftn2" name="_ftnref2" title=""><span class="MsoFootnoteReference"><span class="MsoFootnoteReference"><span style="font-family: Arial, sans-serif; font-size: 9pt; line-height: 115%;">[2]</span></span></span></a><o:p></o:p></span></div>
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<span style="font-size: 9pt;">Lack of incentive is blamed for this outcome:
“Unlike in some of the other areas we have looked at there are no obvious
rewards that accrue to researchers who decide to make their datasets
publicly-available – though few deny that sharing datasets produced with public
funds is a worthwhile principle….. researchers producing small scale datasets
see no reason to invest the time and effort required to make their datasets
publicly available. <i>Besides which, some
want to control their data, limit the possibility of the data being
misrepresented, and limit the scope for competition</i> [our italics].” <a href="file:///I:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2030_09_2011%20v1%20Social.docx#_ftn3" name="_ftnref3" title=""><span class="MsoFootnoteReference"><span class="MsoFootnoteReference"><span style="font-family: Arial, sans-serif; font-size: 9pt; line-height: 115%;">[3]</span></span></span></a><o:p></o:p></span></div>
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<span style="font-size: 9pt;">“Other disincentives include lack of time and
resources; lack of experience and expertise in data management and in matters
such as the provision of good metadata; legal and ethical constraints; lack of
an appropriate archive service; and fear of exploitation or inappropriate use
of the data….. Relatively few researchers have the expertise, resources and
inclination to perform themselves all the tasks necessary to make their data
not only available, but readily accessible and usable by others.”<a href="file:///I:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2030_09_2011%20v1%20Social.docx#_ftn4" name="_ftnref4" title=""><span class="MsoFootnoteReference"><span class="MsoFootnoteReference"><span style="font-family: Arial, sans-serif; font-size: 9pt; line-height: 115%;">[4]</span></span></span></a> Many researchers lack the
skills to meet the quality standards imposed by data centres without substantial
help from specialists.<o:p></o:p></span></div>
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<span style="font-size: 9pt;">Additionally, “creating longitudinal datasets
is an expensive business and therefore the people responsible for them tend to
feel the need to protect them. This is manifested in reported anxiety about
commercial organisations using data, deriving slightly or materially different
datasets and claiming intellectual property rights over these new datasets.”<a href="file:///I:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2030_09_2011%20v1%20Social.docx#_ftn5" name="_ftnref5" title=""><span class="MsoFootnoteReference"><span class="MsoFootnoteReference"><span style="font-family: Arial, sans-serif; font-size: 9pt; line-height: 115%;">[5]</span></span></span></a><o:p></o:p></span></div>
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<span style="font-size: 9pt;">Across the biomedical sciences directors and
PIs see their restricted data as their intellectual capital: “As with most areas of research, there is
competition between researchers to produce the best work in the best journal… Many
researchers wish to retain exclusive use of the data they have created until
they have extracted all the publication value they can.”<a href="file:///I:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2030_09_2011%20v1%20Social.docx#_ftn6" name="_ftnref6" title=""><span class="MsoFootnoteReference"><span class="MsoFootnoteReference"><span style="font-family: Arial, sans-serif; font-size: 9pt; line-height: 115%;">[6]</span></span></span></a><o:p></o:p></span></div>
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<span style="font-size: 9pt;">From the perspective of commercial / industry
groups d</span><span style="font-size: 9pt;">ata sharing presents many of the same challenges: Intellectual
Property and Confidentiality are particularly sensitive issues. In the past big
pharmaceuticals organisations have traditionally been conservative over data
sharing – concerns include loss of control, cost, other units reaching
different conclusions or deriving novel insights which may have commercial
value.<o:p></o:p></span></div>
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<span style="font-size: 9pt; line-height: 115%;">Within this
field there exists a significant heterogeneity of needs. The complexity and
diversity of the biomedical research landscape breeds diversity in tools and
methodologies for data</span><span lang="EN-US" style="font-size: 9pt; line-height: 115%;"> capture
and analysis, storage, maintenance and curation and this too may fuel confusion
and dampen enthusiasm.<o:p></o:p></span></div>
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<a href="file:///I:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2030_09_2011%20v1%20Social.docx#_ftnref1" name="_ftn1" title=""><span class="MsoFootnoteReference"><span style="font-size: 8pt;"><span class="MsoFootnoteReference"><span style="font-family: Arial, sans-serif; font-size: 8pt; line-height: 115%;">[1]</span></span></span></span></a><span style="font-size: 8pt;"> <i>To Share or not to Share: Publication and Quality Assurance of Research
Data Outputs - </i><o:p></o:p></span><span style="font-size: 8pt;">- Report commissioned by the Research
Information Network (RIN) in association with the Joint Information Systems
Committee and the National Environment Research Council (NERC) – published June
2008. This report covered six discrete research areas, two of which were Social
and Public Health Sciences and Genomics and two interdisciplinary areas, one of
which was Systems Biology.</span></div>
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<a href="file:///I:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2030_09_2011%20v1%20Social.docx#_ftnref2" name="_ftn2" title=""><span class="MsoFootnoteReference"><span style="font-size: 8pt;"><span class="MsoFootnoteReference"><span style="font-family: Arial, sans-serif; font-size: 8pt; line-height: 115%;">[2]</span></span></span></span></a><span style="font-size: 8pt;"> Ibid.<o:p></o:p></span></div>
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<a href="file:///I:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2030_09_2011%20v1%20Social.docx#_ftnref3" name="_ftn3" title=""><span class="MsoFootnoteReference"><span style="font-size: 8pt;"><span class="MsoFootnoteReference"><span style="font-family: Arial, sans-serif; font-size: 8pt; line-height: 115%;">[3]</span></span></span></span></a><span style="font-size: 8pt;"> Ibid.<o:p></o:p></span></div>
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<a href="file:///I:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2030_09_2011%20v1%20Social.docx#_ftnref4" name="_ftn4" title=""><span class="MsoFootnoteReference"><span style="font-size: 8pt;"><span class="MsoFootnoteReference"><span style="font-family: Arial, sans-serif; font-size: 8pt; line-height: 115%;">[4]</span></span></span></span></a><span style="font-size: 8pt;"> Ibid.<o:p></o:p></span></div>
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<a href="file:///I:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2030_09_2011%20v1%20Social.docx#_ftnref5" name="_ftn5" title=""><span class="MsoFootnoteReference"><span style="font-size: 8pt;"><span class="MsoFootnoteReference"><span style="font-family: Arial, sans-serif; font-size: 8pt; line-height: 115%;">[5]</span></span></span></span></a><span style="font-size: 8pt;"> Ibid.<o:p></o:p></span></div>
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<a href="file:///I:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2030_09_2011%20v1%20Social.docx#_ftnref6" name="_ftn6" title=""><span class="MsoFootnoteReference"><span style="font-size: 8pt;"><span class="MsoFootnoteReference"><span style="font-family: Arial, sans-serif; font-size: 8pt; line-height: 115%;">[6]</span></span></span></span></a><span style="font-size: 8pt;"> Ibid.</span><span style="font-size: 8pt;"><o:p></o:p></span></div>
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<br />Bioinformatic5http://www.blogger.com/profile/05450325528399173016noreply@blogger.com0tag:blogger.com,1999:blog-5688296140002460459.post-82731083129556751552012-01-23T03:59:00.000-08:002012-01-23T03:59:33.083-08:00Data sharing in research - cultural and technical barriers in Life Sciences and Public HealthAs promised for the PDF-shy - the first section of our review of attitudes to data sharing in Life Sciences and Public Health - it's also well worth reading the Research Information Network's (RIN) publication <a href="http://www.jisc.ac.uk/news/stories/2011/09/~/media/Data%20Centres-Updated.ashx">Data centres: their use, value and impact</a> which <a href="http://www.jisc.ac.uk/news/stories/2011/09/datacentres.aspx">RIN neatly summarise here</a>. This review was meant to serve as a 'primer' aggregating analyses from the last few years in this area and as such references other publications pretty heavily - so do check out the footnotes if you want to explore further. We'll post the next section on Funders' policies tomorrow.<br />
<br />
<span style="font-family: "Arial","sans-serif"; font-size: 10.0pt; line-height: 115%; mso-ansi-language: EN-GB; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">Summary:<b> </b><i>Initiatives pursued by the funders and publishers of research to
promote data-sharing have moved the agenda forward, however, cultural and
technical barriers remain. Attitudes and abilities vary across specialities
within biomedical research and though obliging data sharing has had some
success, incentives and expertise are still lacking in many areas.</i></span><br />
<span style="font-family: "Arial","sans-serif"; font-size: 10.0pt; line-height: 115%; mso-ansi-language: EN-GB; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;"><i><br /></i></span><br />
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<a href="" name="_Toc303676842"><span style="font-family: 'Times New Roman', serif; font-weight: normal; line-height: 115%;"><span style="font: 7.0pt "Times New Roman";"> </span></span>The Current Situation</a></h3>
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<span style="font-size: 9.0pt; mso-bidi-font-family: Arial;"><o:p> </o:p></span>The
last ten years have seen consistent and targeted promotion of data sharing in
research by organisations such as the Research Councils, the National Cancer
Research Institute (NCRI), research charities and other funders and publishers
of research. The aims are clear: “Ensuring data are made widely available to
the research community accelerates the pace of discovery and enhances the
efficiency of the research enterprise.”<a href="file:///I:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2013_09_2011%20v1%20Social.docx#_ftn1" name="_ftnref1" title=""><span class="MsoFootnoteReference"><span class="MsoFootnoteReference"><span style="font-family: "Arial","sans-serif"; font-size: 10.0pt; line-height: 115%; mso-ansi-language: EN-GB; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">[1]</span></span></span></a></div>
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<o:p></o:p></div>
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The
assumption is that data sharing is a ‘good thing’ and that connectivity between
data will enable greater research potential. There has been a lot of activity
in areas such as access and governance, initiatives providing portals and
developing standards and there is evidence that “in many research fields – from
genetics and molecular biology to the social sciences –data sharing is ingrained
in how researchers work”<a href="file:///I:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2013_09_2011%20v1%20Social.docx#_ftn2" name="_ftnref2" title=""><span class="MsoFootnoteReference"><!--[if !supportFootnotes]--><span class="MsoFootnoteReference"><span style="font-family: "Arial","sans-serif"; font-size: 10.0pt; line-height: 115%; mso-ansi-language: EN-GB; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">[2]</span></span><!--[endif]--></span></a> and that, with regard to
Systems Biology at least, “data sharing, despite some anomalies, is the prevailing
ethic.”<a href="file:///I:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2013_09_2011%20v1%20Social.docx#_ftn3" name="_ftnref3" title=""><span class="MsoFootnoteReference"><!--[if !supportFootnotes]--><span class="MsoFootnoteReference"><span style="font-family: "Arial","sans-serif"; font-size: 10.0pt; line-height: 115%; mso-ansi-language: EN-GB; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">[3]</span></span><!--[endif]--></span></a><o:p></o:p></div>
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The picture is mixed across the
life-sciences, however, as noted in this recent call for contributions to a
thematic series on data standardisation, sharing and publication by the online
Journal BM Research Notes: “different disciplines have embraced the
possibilities of data sharing and open data to differing extents, and it can
take the leadership of a small number of individuals to develop and promote
their standard to secure widespread adoption, and enable interoperability of
scientific data… In other cases a standard of data collection and preparation
might be well known amongst circles of experts but perhaps unknown to
researchers in different or even related fields. But with few journals
considering data-driven articles and apparent inconsistencies in incentives and
rewards for data publication, the availability of definitive and
freely-available examples of re-usable, standardized data across the life
sciences is patchy at best.”<a href="file:///I:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2013_09_2011%20v1%20Social.docx#_ftn4" name="_ftnref4" title=""><span class="MsoFootnoteReference"><!--[if !supportFootnotes]--><span class="MsoFootnoteReference"><span style="font-family: "Arial","sans-serif"; font-size: 10.0pt; line-height: 115%; mso-ansi-language: EN-GB; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">[4]</span></span><!--[endif]--></span></a><o:p></o:p></div>
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Funders and journals are addressing this
issue, promoting data sharing by various means including policies obliging
researchers to make their output publicly available. However, “Where funder
policies do not reach, there is a mix of results. Some researchers make great
efforts to share data while others may retain their findings or publish in a
form that means that although data are available, they are not readily
accessible”<a href="file:///I:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2013_09_2011%20v1%20Social.docx#_ftn5" name="_ftnref5" title=""><span class="MsoFootnoteReference"><!--[if !supportFootnotes]--><span class="MsoFootnoteReference"><span style="font-family: "Arial","sans-serif"; font-size: 10.0pt; line-height: 115%; mso-ansi-language: EN-GB; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">[5]</span></span><!--[endif]--></span></a>
or ‘protecting by pdf’ as the practice is known within the community.<o:p></o:p></div>
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The situation is least advanced in Social
and Public Health Sciences: “There are many datasets produced by individual
researchers or small project teams that could have long term viability if they
were offered to an appropriate data centre, but this tends not to be the
natural course of things. The sharing of datasets from small scale research
projects appears to be relatively uncommon at present.”<a href="file:///I:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2013_09_2011%20v1%20Social.docx#_ftn6" name="_ftnref6" title=""><span class="MsoFootnoteReference"><!--[if !supportFootnotes]--><span class="MsoFootnoteReference"><span style="font-family: "Arial","sans-serif"; font-size: 10.0pt; line-height: 115%; mso-ansi-language: EN-GB; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">[6]</span></span><!--[endif]--></span></a> Other analysts concur: “By
contrast, this culture has yet to be widely embraced by the public health
research community.”<a href="file:///I:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2013_09_2011%20v1%20Social.docx#_ftn7" name="_ftnref7" title=""><span class="MsoFootnoteReference"><!--[if !supportFootnotes]--><span class="MsoFootnoteReference"><span style="font-family: "Arial","sans-serif"; font-size: 10.0pt; line-height: 115%; mso-ansi-language: EN-GB; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">[7]</span></span><!--[endif]--></span></a><b><o:p></o:p></b></div>
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Whilst the battle for cultural change
appears to be far advanced in some areas and at least engaged in others,
attitudes are not the only barrier: “Problems of reuse centre around… technical
issues… – the variety of formats, the non-standardisation of formats, the need
for proprietary software and so forth.”<a href="file:///I:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2013_09_2011%20v1%20Social.docx#_ftn8" name="_ftnref8" title=""><span class="MsoFootnoteReference"><!--[if !supportFootnotes]--><span class="MsoFootnoteReference"><span style="font-family: "Arial","sans-serif"; font-size: 10.0pt; line-height: 115%; mso-ansi-language: EN-GB; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">[8]</span></span><!--[endif]--></span></a><o:p></o:p></div>
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The picture is not uniform across all fields
within biomedical research - in some areas data sensitivity and cultural
barriers remain more challenging to address than technical and ethical issues.
Others, genomics for example, appear comparatively mature, with both cultural
and technical issues well in hand.<o:p></o:p></div>
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<br /></div>
<div>
<hr align="left" size="1" width="33%" />
<!--[endif]-->
<div id="ftn1">
<div class="MsoFootnoteText">
<a href="file:///I:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2013_09_2011%20v1%20Social.docx#_ftnref1" name="_ftn1" title=""><span class="MsoFootnoteReference"><span style="font-size: 8.0pt; mso-bidi-font-family: Arial;"><!--[if !supportFootnotes]--><span class="MsoFootnoteReference"><span style="font-family: "Arial","sans-serif"; font-size: 8.0pt; line-height: 115%; mso-ansi-language: EN-GB; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">[1]</span></span><!--[endif]--></span></span></a><span style="font-size: 8.0pt; mso-bidi-font-family: Arial;"> Walport M, Brest P. <i>Sharing research data to improve public
health</i>. The Lancet, Early Online Publication, 10 January 2011<o:p></o:p></span></div>
</div>
<div id="ftn2">
<div class="MsoFootnoteText">
<a href="file:///I:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2013_09_2011%20v1%20Social.docx#_ftnref2" name="_ftn2" title=""><span class="MsoFootnoteReference"><span style="font-size: 8.0pt; mso-bidi-font-family: Arial;"><!--[if !supportFootnotes]--><span class="MsoFootnoteReference"><span style="font-family: "Arial","sans-serif"; font-size: 8.0pt; line-height: 115%; mso-ansi-language: EN-GB; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">[2]</span></span><!--[endif]--></span></span></a><span style="font-size: 8.0pt; mso-bidi-font-family: Arial;"> Ibid.<o:p></o:p></span></div>
</div>
<div id="ftn3">
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<a href="file:///I:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2013_09_2011%20v1%20Social.docx#_ftnref3" name="_ftn3" title=""><span class="MsoFootnoteReference"><span style="font-size: 8.0pt; mso-bidi-font-family: Arial;"><!--[if !supportFootnotes]--><span class="MsoFootnoteReference"><span style="font-family: "Arial","sans-serif"; font-size: 8.0pt; line-height: 115%; mso-ansi-language: EN-GB; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">[3]</span></span><!--[endif]--></span></span></a><span style="font-size: 8.0pt; mso-bidi-font-family: Arial;"> <i>To Share or not to Share: Publication and Quality Assurance of Research
Data Outputs</i> - Report commissioned by the Research Information Network
(RIN) in association with the Joint Information Systems Committee and the
National Environment Research Council (NERC) – published June 2008. This report
covered six discrete research areas, two of which were Social and Public Health
Sciences and Genomics and two interdisciplinary areas, one of which was Systems
Biology.<o:p></o:p></span></div>
</div>
<div id="ftn4">
<div class="MsoFootnoteText">
<a href="file:///I:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2013_09_2011%20v1%20Social.docx#_ftnref4" name="_ftn4" title=""><span class="MsoFootnoteReference"><span style="font-size: 8.0pt; mso-bidi-font-family: Arial;"><!--[if !supportFootnotes]--><span class="MsoFootnoteReference"><span style="font-family: "Arial","sans-serif"; font-size: 8.0pt; line-height: 115%; mso-ansi-language: EN-GB; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">[4]</span></span><!--[endif]--></span></span></a><span style="font-size: 8.0pt; mso-bidi-font-family: Arial;"> A call for BMC Research
Notes contributions promoting best practice in data standardization, sharing
and publication; </span><a href="http://www.biomedcentral.com/1756-0500/3/235/"><span style="font-size: 8.0pt; mso-bidi-font-family: Arial;">http://www.biomedcentral.com/1756-0500/3/235/</span></a></div>
</div>
<div id="ftn5">
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<a href="file:///I:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2013_09_2011%20v1%20Social.docx#_ftnref5" name="_ftn5" title=""><span class="MsoFootnoteReference"><span style="font-size: 8.0pt; mso-bidi-font-family: Arial;"><!--[if !supportFootnotes]--><span class="MsoFootnoteReference"><span style="font-family: "Arial","sans-serif"; font-size: 8.0pt; line-height: 115%; mso-ansi-language: EN-GB; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">[5]</span></span><!--[endif]--></span></span></a><span style="font-size: 8.0pt; mso-bidi-font-family: Arial;"> Ibid.<o:p></o:p></span></div>
</div>
<div id="ftn6">
<div class="MsoFootnoteText">
<a href="file:///I:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2013_09_2011%20v1%20Social.docx#_ftnref6" name="_ftn6" title=""><span class="MsoFootnoteReference"><span style="font-size: 8.0pt; mso-bidi-font-family: Arial;"><!--[if !supportFootnotes]--><span class="MsoFootnoteReference"><span style="font-family: "Arial","sans-serif"; font-size: 8.0pt; line-height: 115%; mso-ansi-language: EN-GB; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">[6]</span></span><!--[endif]--></span></span></a><span style="font-size: 8.0pt; mso-bidi-font-family: Arial;"> Ibid.<o:p></o:p></span></div>
</div>
<div id="ftn7">
<div class="MsoFootnoteText">
<a href="file:///I:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2013_09_2011%20v1%20Social.docx#_ftnref7" name="_ftn7" title=""><span class="MsoFootnoteReference"><span style="font-size: 8.0pt; mso-bidi-font-family: Arial;"><!--[if !supportFootnotes]--><span class="MsoFootnoteReference"><span style="font-family: "Arial","sans-serif"; font-size: 8.0pt; line-height: 115%; mso-ansi-language: EN-GB; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">[7]</span></span><!--[endif]--></span></span></a><span style="font-size: 8.0pt; mso-bidi-font-family: Arial;"> Walport M, Brest P. <i>Sharing research data to improve public
health</i>. The Lancet, Early Online Publication, 10 January 2011<o:p></o:p></span></div>
</div>
<div id="ftn8">
<div class="MsoFootnoteText">
<a href="file:///I:/For%20Home%20Working%2029_09_2011/PEST%20analysis%20work/For%20PEST%20analysis%20FINAL%2013_09_2011%20v1%20Social.docx#_ftnref8" name="_ftn8" title=""><span class="MsoFootnoteReference"><span style="font-size: 8.0pt; mso-bidi-font-family: Arial;"><!--[if !supportFootnotes]--><span class="MsoFootnoteReference"><span style="font-family: "Arial","sans-serif"; font-size: 8.0pt; line-height: 115%; mso-ansi-language: EN-GB; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">[8]</span></span><!--[endif]--></span></span></a><span style="font-size: 8.0pt; mso-bidi-font-family: Arial;"> <i>To Share or not to Share: Publication and Quality Assurance of Research
Data Outputs</i></span><i><o:p></o:p></i></div>
</div>
</div>Bioinformatic5http://www.blogger.com/profile/05450325528399173016noreply@blogger.com0tag:blogger.com,1999:blog-5688296140002460459.post-11114692293483245102012-01-18T06:34:00.000-08:002012-01-18T06:34:22.458-08:00Attitudes to Data Sharing in ResearchThanks to the NHS-Higher Education Forum for publishing some of the work we've done for the National Cancer Research Institute - namely <a href="http://www.nhs-he.org.uk/best-practice/documents/Culture%20of%20data-sharing%20(2).pdf">a review of attitudes to data sharing in research</a> - as part of the output of their <a href="http://www.nhs-he.org.uk/best-practice/information-sharing.html">NHS-HE Connectivity Working Group's Information Governance and Data Sharing workstream</a>.<br />
<br />
We'll reproduce the content as a series on this blog over the next few days for the PDF-shy.Bioinformatic5http://www.blogger.com/profile/05450325528399173016noreply@blogger.com0tag:blogger.com,1999:blog-5688296140002460459.post-35802223431801336202012-01-16T07:17:00.000-08:002012-01-16T07:17:42.226-08:00UKCRC Funders' vision for Human Tissue Resources - STRATUM project<span style="font-family: inherit;">We had an interesting 'phone conversation today with the head of the STRATUM project and one of the project's workstream leads discussing what promises to be a valuable and long-necessary piece of work looking at the creation of a centralised biobanking data repository for the UK.</span><br />
<div>
<span style="font-family: inherit;"><br /></span></div>
<div>
<span style="font-family: inherit;">Funded in part by the Technology Strategy Board, it will be a public-private partnership. STRATUM (<span style="background-color: white; line-height: 16px;">Strategic Tissue Repository Alliance Through Unified Methodology) aims to maximise the value of stored human tissue by </span><span style="background-color: white; line-height: 16px;">creating the foundations of a UK biobanking network. The project will run from October 2011 for 18 months. </span></span><span style="font-family: inherit;"><span style="line-height: 16px;">The partners in the project at present are</span></span><span style="font-family: inherit;">: </span><br />
<span style="font-family: inherit;"><br /></span><br />
<span style="font-family: inherit;">From Pharma: AstraZeneca UK Ltd (lead), GlaxoSmithKline, Lab21 Ltd</span></div>
<div>
<span style="font-family: inherit;">From Academia: University of Manchester, University of Nottingham, University of Leicester</span></div>
<div>
<br /></div>
<div>
There's not a great deal out there on the web at present about the initiative but check out the <a href="http://www.ukcrc.org/infrastructure/expmed/fundersvisionforhumantissuesresources/">UK Clinical Research Collaboration's notes on the workstreams involved</a>.</div>Bioinformatic5http://www.blogger.com/profile/05450325528399173016noreply@blogger.com2tag:blogger.com,1999:blog-5688296140002460459.post-12773871432978115382012-01-12T05:03:00.000-08:002012-01-12T05:07:49.304-08:00Informal response from the National Cancer Intelligence Network - and Department of Health framework for Cancer IntelligenceWe had some informal feedback on our <a href="http://biomedres.blogspot.com/2012/01/response-to-national-cancer.html">response (we know, it was too long for a blog post!) to the National Cancer Intelligence Network's (NCIN) consultation</a> document yesterday - in passing, a colleague from the NCIN, with no hint of irony! indicated that they had taken three key points from it which were:<br />
<br />
<ul>
<li>Skills and experience in eHealth need nurturing in the UK</li>
<li>Data quality is the key to driving usage
</li>
<li>To maintain an awareness of the potential for duplication of effort and spend in their proposals</li>
</ul>
<br />
We also promised you a link <span style="font-family: inherit;">to the <a href="http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_131696">Department of Health's report An Intelligence Framework for Cancer</a> - published 13th December 2011: "<span style="background-color: white; color: #333333; line-height: 15px;">High quality care is critical to improving cancer outcomes. While this country has many of the elements required to collect, analyse and publish information; there are also deficiencies in cancer intelligence. This document sets out plans to tackle these deficiencies and sets out aspirations."</span></span><br />
<span style="color: #333333;"><span style="line-height: 15px;"><br /></span></span><br />
<span style="line-height: 15px;">The document was produced by the </span><span style="line-height: 15px;"><a href="http://www.ncin.org.uk/home.aspx">NCIN</a>, following a commitment made by the Department of Health </span><span style="line-height: 15px;">to the Public Accounts Committee in May 2011. </span><br />
<span style="line-height: 15px;"><br /></span><br />
<span style="line-height: 15px;">In case you are not aware: "The NCIN is a UK-wide initiative </span><span style="line-height: 15px;">working to drive improvements in standards of cancer care and clinical outcomes by </span><span style="line-height: 15px;">improving and using the information collected about cancer patients for analysis, </span><span style="line-height: 15px;">publication and research."</span><br />
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<span style="background-color: white; color: #333333; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 15px;"><br /></span><br />
<span style="background-color: white; color: #333333; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 15px;"><br /></span><br />
<br />Bioinformatic5http://www.blogger.com/profile/05450325528399173016noreply@blogger.com0