ONC's "Health Data Palooza" - A Title of Exceptionally Bad Taste, For a "See No Evil" Meeting

The Office of the National Coordinator of Health IT has sent out this announcement:<br /><span style="font-size: small;"><br /></span><div style="color: #16588b; font-family: Arial, Helvetica, sans-serif; font-size: 20px;"><span style="font-size: small;">Subject: HEALTH DATA PALOOZA III: Unleashing the Power of Data to Improve Health<br />From:    ONC Health IT <onchealthit .="." service.govdelivery.com="service.govdelivery.com"><br />Date:    Thu, May 10, 2012 10:36 am </onchealthit></span></div><div style="color: #16588b; font-family: Arial,Helvetica,sans-serif; font-size: 20px;"><br /></div><div style="color: #16588b; font-family: Arial,Helvetica,sans-serif; font-size: 20px;">HEALTH DATA PALOOZA III: Unleashing the Power of Data to Improve Health</div><div style="text-align: center;"><br /><span style="font-size: small;">June 5-6th, Washington DC<br />Health Data and Innovation Week<br /><a href="http://links.govdelivery.com/track?type=click&enid=ZWFzPTEmbWFpbGluZ2lkPTIwMTIwNTEwLjc0NDU0MDEmbWVzc2FnZWlkPU1EQi1QUkQtQlVMLTIwMTIwNTEwLjc0NDU0MDEmZGF0YWJhc2VpZD0xMDAxJnNlcmlhbD0xNjk4NDczMyZlbWFpbGlkPXNjb3RzaWx2QGFvbC5jb20mdXNlcmlkPXNjb3RzaWx2QGFvbC5jb20mZmw9JmV4dHJhPU11bHRpdmFyaWF0ZUlkPSYmJg==&&&101&&&http://www.hdiforum.org" target="_blank">www.hdiforum.org</a> | #healthdata<br /><br /><b>CONFIRMED SPEAKERS</b><br /><b>Kathleen Sebelius</b>, Secretary of Health and Human Services<br /><b>Marc Bertolini</b>, CEO Aetna<br /><b>Thomas Goetz</b>, Execuitve Editor of WIRED<br /><b>Atul Gawande</b>, surgeon and author<br /><b>Bill Frist</b>, former Republican Majority Leader<br /><b>Dominique Dawes</b>, two time gold medal winner<br /><b>Todd Park</b>, US Chief Technology Officer<br /><br /><br />Hear from <b>Farzad Mostashari</b>, National Coordinator for Health IT on <b>data liberation</b><br />ONC will host breakout sessions on Consumer e-Health, HealthData.gov, <br />and Uses of Data by ACOs<br />ONC will release nine challenges during this year’s event! </span></div><div style="text-align: center;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><span style="font-size: small;">This title for a government-sponsored meeting is bizarre and tasteless in my opinion.  What is deemed by ONC to be the major source of this data?  Health IT.</span></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><span style="font-size: small;"><b>"Palooza?"</b></span></div><div style="text-align: left;"><span style="font-size: small;"><br /></span></div><div style="text-align: left;"><span style="font-size: small;">From Urban Dictionary:</span></div><div style="text-align: left;"><span style="font-size: small;"><br /></span></div><blockquote dir="ltr" style="margin-right: 0px;"><div><b>Palooza - <a href="http://www.urbandictionary.com/define.php?term=palooza">http://www.urbandictionary.com/define.php?term=palooza</a></b></div><div class="definition"><b></b></div></blockquote><blockquote dir="ltr" style="margin-right: 0px;"><div class="definition"><b>An all-out crazy party; partying at one place with a ton of people like there's no tomorrow; The art of throwing a very drunken extravagant party with a plethora of friends</b></div></blockquote><div></div><div></div><div><br /><span style="font-size: small;"><b>"Data Liberation?"    </b></span></div><div></div><div><br /><span style="font-size: small;">What about "patient liberation" -- from risk? </span></div><div></div><div><br />Considering it unlikely that issues in the bulleted points below, commented on in detail in past posts on this blog, will be discussed at this meeting, the title of the meeting is especially tasteless:</div><div></div><div style="font-family: Arial,Helvetica,sans-serif;"><ul><li><span style="font-size: small;">There is a markedly unscientific "irrational exuberance" pushing clinical IT into wide use at a dangerously rapid pace. This exuberance is contradicted by a growing body of literature that shows the benefits are likely far less than stated, e.g., by way of example, the ad-hoc set at </span><span style="font-size: small;"><a href="http://www.ischool.drexel.edu/faculty/ssilverstein/cases/?loc=cases&sloc=readinglist">http://www.ischool.drexel.edu/faculty/ssilverstein/cases/?loc=cases&sloc=readinglist</a></span><span style="font-size: small;"> </span> </li><li><span style="font-size: small;">The technology remains experimental, its rollout is a human subjects experiment on a massive scale lacking nearly all the protections of other human subjects experimentation and for IT in mission critical settings (e.g., informed consent, formal quality control/validation/regulation, formal postmarket surveillance and reporting) due to extraordinary legal and regulatory special accommodations afforded the technology and its purveyors; </span></li><li><span style="font-size: small;">Defects of in-use systems are rampant, inappropriately turning patients and clinicians into software alpha and beta testers (e.g., as in the voluntary FDA MAUDE database, <a href="http://hcrenewal.blogspot.com/2011/01/maude-and-hit-risk-mother-mary-what-in.html">http://hcrenewal.blogspot.com/2011/01/maude-and-hit-risk-mother-mary-what-in.html</a> which contains information for just one HIT vendor, Cerner, who voluntarily reports such issues);</span> </li><li><span style="font-size: small;">The technology is unsupportive of clinician cognitive needs (2009 National Research Council study, which also stated that accelerating interdisciplinary research in biomedical informatics, computer science, social science, and health care engineering will be essential to perfect this technology);</span> </li><li><span style="font-size: small;">The roles of <a href="http://hcrenewal.blogspot.com/2011/08/from-senior-clinician-down-under.html" target="_blank">scientific discovery and anecdote</a> have been turned on their heads. RCT's of clinical IT are nearly non-existent and lower-level evidence (e.g., weak observational, pre-post, </span><span style="font-size: small;">qualitative</span><span style="font-size: small;">, and other study types) are cited as "scientific proof" of efficacy and safety justifying hundreds of billions of dollars of taxpayer (or is it Chinese loan?) expenditures.  Yet, risk management-relevant case reports of harmful events and near misses, crucial to help organizations and regulatory agencies understand risks are dismissed as "anecdotal" (e.g., Blumenthal: "The [ONC] committee [investigating FDA reports of HIT endangement] said that nothing it had found would give them any pause that a policy of introducing EMR's could impede patient safety," he said, while ONC issued an article based on questionable research methods entitled </span><span style="font-size: small;">"<a href="http://content.healthaffairs.org/content/30/3/464.full.html">The Benefits Of Health Information Technology: A Review Of The Recent Literature Shows Predominantly Positive Results</a>" </span><span style="font-size: small;">extolling the virtues of HIT, written about at <a href="http://hcrenewal.blogspot.com/2011/03/benefits-of-health-information.html">http://hcrenewal.blogspot.com/2011/03/benefits-of-health-information.html</a>).</span> </li><li><span style="font-size: small;">Risks are definite, with known patient injury and death, but the magnitude is admittedly unknown by JC (2008 Sentinel Event Alert), FDA (2010 Internal memo on HIT risks and statements of Jeffrey Shuren MD JD about known harms likely being "the tip of the iceberg"), IOM (2011 report on HIT risk), ECRI Institute (Top ten healthcare technology hazards for 2011 and 2012), NORCAL Mutual Insurance Company 2009 report on EHR risks, others;</span> </li><li><span style="font-size: small;">Existence of severe impediments to information diffusion about risks explicitly admitted by FDA (2010 memo), IOM (2011 report), others; </span></li><li><span style="font-size: small;">Usability of commercial products in real world settings is often poor (e.g., NIST 2011 study on usability), promoting "use error" (user interface designs that engender users to make errors of commission or omission, where many errors are due not to user error per se but due to designs that are flawed, e.g., poorly written messaging, misuse of color-coding conventions, omission of information, etc.) </span></li><li><span style="font-size: small;">These systems promote capture and display of clinically irrelevant information in the interest of charge capture, and result in <a href="http://hcrenewal.blogspot.com/2011/02/electronic-medical-records-two-weeks.html" target="_blank">reams of "legible gibberish"</a> with many negative characteristics that make it difficult for other clinicians and reviewers to establish a cohesive, definitive narrative of clinical events and timelines.</span></li></ul></div><div></div><div><br />Health IT and health data issues are not 'partying' affairs. An un-seriousness about anything related to health IT seems in vogue of late.<span style="color: black; font-family: 'Arial','sans-serif'; font-size: 10pt;"></span><br /><br />Finally, I ask:  does this "Health Data Palooza" bring my <a href="http://hcrenewal.blogspot.com/2012/02/health-it-ddulites-and-disregard-for.html" target="_blank">Ddulite</a> term to life?</div><div></div><div><br /><blockquote><span style="font-weight: bold;"><span style="color: red; font-style: italic;">Ddulite: Hyper-enthusiastic technophiles who </span></span><span style="color: red; font-style: italic; font-weight: bold;">either deliberately ignore or are blinded to technology's downsides</span><span style="font-weight: bold;"><span style="color: red; font-style: italic;">, ethical issues, and repeated local and mass failures. </span></span></blockquote><br />A Ddulite Palooza.  How charming.<br /><br />Like the recent extravagances of other government agencies such as <a href="http://www.cnn.com/2012/04/16/politics/gsa-hearing/index.html" target="_blank">GSA in Las Vegas</a> and the <a href="http://worldnews.msnbc.msn.com/_news/2012/05/07/11575731-prostitute-at-center-of-secret-service-scandal-agents-were-stupid-brutes?lite" target="_blank">Secret Service in Colombia</a>, let's hope this Data Palooza is a Palooza in name only.<br /><br />In light of those recent scandals, calling a government sponsored meeting a "Palooza" seems inappropriate on that basis as well. <br /><br />-- SS<br /><br />5/13/12  Addendum:<br /><br />A commenter pointed this flyer out:<br /><br /><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTPbMy_j7ie4KaNq3KWvaVvz0U-dCbEJ6UFSqTSyAmbRjMgptx5t_RbH8VRoBEsC_HQnKX-0E0NlppsCpdARzpzgLCAXPfRFN5WhNbiifkKQBMqONs_ORtXBGiny-6_XxVVycRVkTM8CG1/s1600/Health_Datapalooza_Poster_4.25_large.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTPbMy_j7ie4KaNq3KWvaVvz0U-dCbEJ6UFSqTSyAmbRjMgptx5t_RbH8VRoBEsC_HQnKX-0E0NlppsCpdARzpzgLCAXPfRFN5WhNbiifkKQBMqONs_ORtXBGiny-6_XxVVycRVkTM8CG1/s320/Health_Datapalooza_Poster_4.25_large.jpg" width="247" /></a></div><div style="text-align: center;"><span style="font-size: x-small;">(click to enlarge)</span></div><div style="text-align: center;"><br /></div><div style="text-align: left;">I post it here with no additional comments.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">-- SS</div></div>

ONC's "Health Data Palooza" - A Title of Exceptionally Bad Taste, For a "See No Evil" Meeting

The Office of the National Coordinator of Health IT has sent out this announcement: Subject: HEALTH DATA PALOOZA III: Unleashing the Power o...

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