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Thursday, May 10, 2012

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 of Data to Improve Health
From:    ONC Health IT
Date:    Thu, May 10, 2012 10:36 am

HEALTH DATA PALOOZA III: Unleashing the Power of Data to Improve Health

June 5-6th, Washington DC
Health Data and Innovation Week
www.hdiforum.org | #healthdata

CONFIRMED SPEAKERS
Kathleen Sebelius, Secretary of Health and Human Services
Marc Bertolini, CEO Aetna
Thomas Goetz, Execuitve Editor of WIRED
Atul Gawande, surgeon and author
Bill Frist, former Republican Majority Leader
Dominique Dawes, two time gold medal winner
Todd Park, US Chief Technology Officer


Hear from Farzad Mostashari, National Coordinator for Health IT on data liberation
ONC will host breakout sessions on Consumer e-Health, HealthData.gov,
and Uses of Data by ACOs
ONC will release nine challenges during this year’s event! 


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.

"Palooza?"

From Urban Dictionary:

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

"Data Liberation?"    

What about "patient liberation" -- from risk?

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:
  • 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 http://www.ischool.drexel.edu/faculty/ssilverstein/cases/?loc=cases&sloc=readinglist 
  • 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;
  • 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, http://hcrenewal.blogspot.com/2011/01/maude-and-hit-risk-mother-mary-what-in.html which contains information for just one HIT vendor, Cerner, who voluntarily reports such issues);
  • 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);
  • The roles of scientific discovery and anecdote 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, qualitative, 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 "The Benefits Of Health Information Technology: A Review Of The Recent Literature Shows Predominantly Positive Results" extolling the virtues of HIT, written about at http://hcrenewal.blogspot.com/2011/03/benefits-of-health-information.html).
  • 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;
  • Existence of severe impediments to information diffusion about risks explicitly admitted by FDA (2010 memo), IOM (2011 report), others;
  • 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.)
  • These systems promote capture and display of clinically irrelevant information in the interest of charge capture, and result in reams of "legible gibberish" with many negative characteristics that make it difficult for other clinicians and reviewers to establish a cohesive, definitive narrative of clinical events and timelines.

Health IT and health data issues are not 'partying' affairs. An un-seriousness about anything related to health IT seems in vogue of late.

Finally, I ask:  does this "Health Data Palooza" bring my Ddulite term to life?

Ddulite: Hyper-enthusiastic technophiles who either deliberately ignore or are blinded to technology's downsides, ethical issues, and repeated local and mass failures.

A Ddulite Palooza.  How charming.

Like the recent extravagances of other government agencies such as GSA in Las Vegas and the Secret Service in Colombia, let's hope this Data Palooza is a Palooza in name only.

In light of those recent scandals, calling a government sponsored meeting a "Palooza" seems inappropriate on that basis as well.

-- SS

5/13/12  Addendum:

A commenter pointed this flyer out:


(click to enlarge)

I post it here with no additional comments.

-- SS

12 comments:

  1. Mostashavi is a good dancer. But, for too long, the Congress, the POTUS, the HHS, and the ONC have been dancing around the reality that the devices they are promoting and on which they are spending $ billions just do not work as dreamed.

    It is worse than that, however. They cause deaths and injuries in numbers that mey be far higher than these officials and the vendor CEOs desire to know.

    So go ahead, keep dancing at the Palooza, but don't shut me up and cut me off when I ask you questions.

    Be sure that Secretary Sebelius is open for q and a.

    ReplyDelete
  2. The link below may better serve this meeting, representing what doctors are really dealing with when trying to come to terms with EMR’s.

    http://wingofzock.org/2012/05/07/the-electronic-medical-record-doesnt-tell-you-the-story/

    Steve Lucas

    ReplyDelete
  3. $200 for a palooza. Pricey.

    Hoping that LIEber of HIMSS will attned and dance in his red pumps.

    Getting serious now, what is wrong with calling a government gig a palooza? After all, what did the secret service call their soiree?

    This is an attempt to vent their anxiety and frustration with the abject flaws and defects in the devices they espouse.

    It is a depreciation of the significance of the problems...all part of the illusion and sham being played on the taxpayers and patients.

    ReplyDelete
  4. Steve Lucas said...

    The link below may better serve this meeting, representing what doctors are really dealing with when trying to come to terms with EMR’s. http://wingofzock.org/2012/05/07/the-electronic-medical-record-doesnt-tell-you-the-story/

    What the author's describing is what I've called the "inventory system of widgets"-style information system masquerading as a medical chart.

    As in law, it takes years to learn how to create clinically useful and excellent documentation.

    The current EMR fads seem to discount that reality, in yet another sign of the debasement of medicine.

    -- SS

    ReplyDelete
  5. This seems like a conference for these folks to pat themselves on the back and provide a dog and pony show to the naieve attnedees.

    Most of the data that show up on the EHRs that I use is nothing but gibberish. The alerts are bogus. The data is in unreadable format. Medication reconciliation is nearly impossible. The systems are not usable.

    Does anyone think that the leaders and headliners of the palooza orgy have meaningfully useful experiences using EHRs and CPOEs to say anything meaningful, exactly?

    They can not even keep up with the doctor requests for opt out on the e-prescribing experiment.

    This is the JP MOrgan of the health industry: wasting billions $ in a risky experiment aka palooza for the HIT vendors.

    ReplyDelete
  6. It behooves the ONC to sober up after the palooza and deal with the rash of deaths and imjuries associated with the devices they are trumpeting.

    ReplyDelete
  7. Live IT or live with ITMay 12, 2012 at 1:20:00 AM EDT

    Given past behavior, uncorrected, what would you expect?

    ReplyDelete
  8. When I grow up, I want to be a rock star. I want to be a rock star. I want to be a rock star.

    The "confirmed speakers" are listed as "Rock Stars of Health Innovation" on the Flier linked here:

    http://www.hdiforum.org/page/show/511005-health-datapalooza-flyer

    OMG, Cmon Man

    ReplyDelete
  9. Live IT or live with ITMay 14, 2012 at 12:34:00 AM EDT

    The Flyer is perhaps the most astounding hubris I have seen in decades.

    ReplyDelete
  10. Live IT or live with IT said...

    The Flyer is perhaps the most astounding hubris I have seen in decades.

    I presume our taxpayer dollars paid for its design. It looks too good for a government operation.

    -- SS

    ReplyDelete
  11. Healthcare Business News

    Sebelius seeks tech breakthroughs

    By Rich Daly

    Posted: June 6, 2012 - 4:00 pm ET

    The federal government's healthcare leader touted the Obama administration's initiatives to help spur health IT innovation and urged more technological breakthroughs at a gathering of technology professionals in Washington.

    HHS Secretary Kathleen Sebelius chronicled the various federal initiatives in recent years aimed at encouraging the widespread adoption of electronic health records, including the 2009 enactment of a $27 billion EHR incentive program. “Two years ago, the health data initiative began with 25 people in a conference room brainstorming for a vision about how better to improve the health of Americans,” Sebelius said. “We knew we had a limited role to play in making the vision a reality.”

    Since then, the federal government has served as a “convener” and “catalyst” for health technology entrepreneurs to develop the tools needed for widespread transition to electronic health data.

    Among the signs of progress toward widespread use of electronic health data that Sebelius cited was an increase from 25 applications submitted at the first federal health data initiative to nearly 250 applications submitted in the latest one. “Most importantly, we have begun to see some of those innovations make a real difference in the lives of millions of Americans across the country,” Sebelius said. Her department has been touting such developments in recent weeks.

    Sebelius expects further rapid expansion in EHR use by providers, as well as more health applications tailored for use on smartphones and other emerging platforms. “We're committed to giving entrepreneurs even more fuel by making more data available, while maintaining absolute protections on patient privacy,” Sebelius said.

    ReplyDelete