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558:'s health IT contractors, his keynote was titled "Over My Dead Body: Why Reliable Systems Matter to Patients." The title alluded to a supposed remark by a health IT vendor executive, who was rumored to have said that system usability would become a Meaningful Use criterion "over my dead body." deBronkart's assertion was that poor usability harms clinicians' ability to use systems reliably, which can lead to patient harm.
458:"Ideally insurance claims could provide a trove of data that could greatly accelerate the Obama administration's effort to computerize all medical records within five years. The stimulus package contained $ 17 billion to help computerize doctors' records. But transferring existing information from paper or outdated computers could take years and hundreds of millions of dollars to complete.
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and he was treated in a clinical trial of high-dose interleukin-2 (HDIL-2), ending 7/23/07, which was effective in reducing the cancer, although his femur ultimately broke from damage caused by the disease. Visible lesions on follow-up CT scans continued to shrink for two years following treatment,
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He became the most active blogger on e-patients.net, a blog founded by the late Dr. Tom
Ferguson, which he now manages. In February 2009, Ferguson's e-Patient Scholars Working Group elected him founding co-chair (with his physician, Dr. Danny Sands) of the Society for Participatory Medicine. At
463:
Insurance data, by contrast, is already computerized and far easier and cheaper to download. But it is also prone to inaccuracies, partly because of the clunky diagnostic coding language used for medical billing, or because doctors sometimes label a test with the disease they hope to rule out,
616:
After a career in high tech marketing outside Boston, these events led to healthcare transformation and policy issues taking an increasingly large part of his time. In summer 2009 he opened a consulting practice, ePatientDave.com, and went full-time in healthcare in
February 2010. He lives in
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425:(PHR) system. As described in a 3300-word blog post, the transferred data contained much erroneous information: a false medication warning, exaggerated diagnoses, and conditions he'd never had. In addition, the system failed to transfer existing information such as laboratory results,
376:
Before and during his illness, he had been writing journals and blog posts about his experiences. On the hospital's blog he signed himself "Patient Dave"; upon recovery from near-death he started a blog "The New Life of
Patient Dave." In January 2008 he learned of the so-called
476:
The following week deBronkart, Google, and the hospital were scheduled to speak at a major industry conference "Health 2.0 Meets Ix," and the PHR story became one of the main topics. By end of the month over 11,000 articles and blog posts on the subject had appeared.
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did when facing a fatal condition in the 1960s), Sing (his doctor advised him *not* to drop out of his chorus), and Eat Like a Pig (his doctor ordered a diet to increase his caloric intake). The third, "Facing Death - With Hope" is a small extract from this book.
449:
The timing of the discovery was accidentally important because, at that time, national political negotiations were underway to promote the adoption of computerized medical record systems. Referring to the 2009 ARRA economic stimulus package,
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In
January he addressed The FDA Workshop on Medical Device Interoperability: achieving safety and effectiveness on software development issues, patients' desire for better tools, and the business ecosystem aspects of device
469:"Claims data is notoriously inaccurate and notoriously incomplete with respect to an expression of the problems a person has," said Dr. David Kibbe, a senior technology adviser to the American Academy of Family Physicians.
385:, which described how patients are using the Internet to participate actively in their care. He recognized it as a match for his own actions during his illness and renamed himself "e-Patient Dave," and his blog
445:
said billing codes "sometimes reflect imprecise information plugged into codes required by insurers. ... some doctors fear that inaccurate information from billing data could lead to improper treatment."
503:
deBronkart became a frequent speaker at healthcare industry conferences. He was the first patient to deliver the opening keynote at a
Medicine 2.0 conference, and spoke at many others throughout 2009.
492:
MD MPH (right), founder and producer of the
Medicine 2.0 conference series, and chair/director of the Medicine 2.0'09 congress in Toronto, thanks Dave Debronkart for his keynote address.
515:
In
September 2009 he delivered the opening keynote (photo above) at the Medicine 2.0 Congress in Toronto. The same month he was featured in the cover story "Patient of the Future" in
541:
invited him to speak on "What e-Patients Want from
Doctors, Hospitals and Health Plans in a Time of Change." The speech received an average audience rating of 4.9 on a 5-point scale.
597:
He is the author of three books. The best known is "Let
Patients Help: A Patient Engagement Handbook," published in 2013 on the CreateSpace Independent Publishing Platform.
544:
Also in May he delivered a keynote at the World
Congress on IT in Amsterdam, in the eHealth track, and represented the patient voice in the track's closing panel.
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magazine. Three months later the magazine named him and his physician, Dr. Danny Sands, as two of the annual "20 People Who Make Healthcare Better".
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made a presentation called "Consumers in the Trenches" at the Medical Library Association 2010 Annual Meeting and Exhibition in Washington, DC.
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526:'s Empowered Patient feature quoted him and alluded to the speech's title in its headline, "Patients demand: 'Give us our damned data.'"
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603:, published in 2010 by Changing Outlook Press. The title comes from the positive approach he chose to confront his disease: Laugh (as
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Please help improve this article by looking for better, more reliable sources. Unreliable citations may be challenged and removed.
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conferences and meetings he is a frequent speaker about the "e-Patient" movement, also referred to as "patient engagement" and "
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In January 2007, a routine shoulder x-ray incidentally disclosed a shadow in the lung, which turned out to be metastasized
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Laugh, Sing, and Eat Like a Pig: How an empowered patient beat Stage IV cancer (and what healthcare can learn from it)
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Within days the hospital announced it would no longer use billing data as a proxy for clinically valid information.
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Early in 2009, deBronkart decided to activate his hospital's option to transfer his personal health data into
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The central problem was that the hospital transferred insurance billing codes, not clinical data.
1040:"The New Life of e-Patient Dave: Participating in my hospital's Lean quality improvement retreat"
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In March 2010 his hospital invited his participation as a voice of the patient in their annual
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The post was picked up on many blogs, and on April 13, 2009, was covered on the front page of
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352:). His median survival time at diagnosis was 24 weeks. A member of online communities since
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in 1989, he responded by seeking online resources in addition to receiving treatment at
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cited him in its article "Getting Medical Advice on the Web from Other Patients."
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In May 2009, citing "a bumpy and public transition of his medical records,"
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called him "a recognized online champion of 'participatory medicine'."
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TEPR's advocacy for online resources includes a story of survival
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Imagine someone had been managing your data and then you looked
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In May 2010 the Institute for Clinical Systems Improvement and
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and the cancer was determined at that time to be in remission.
948:, Patients demand: "Give us our damned data," January 14, 2010
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That keynote was titled "Gimme My Damn Data." In January 2010
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from the article and its talk page, especially if potentially
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workshop. A series of blog posts described the experience.
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922:"Gimme My Damn Data - Medicine 2.0 Conference Abstract"
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1018:"Dave deBronkart: Meet e-Patient Dave | Video on"
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Google search for "e-Patient Dave" and "google health"
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Getting Medical Advice on the Web from Other Patients
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Getting Medical Advice on the Web from Other Patients
1061:""Let Patients Help": A patient engagement handbook"
211:, and by adding encyclopedic content written from a
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814:Beth Israel halts sending insurance data to Google
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1128:e-Patients: How They Can Help Us Heal Healthcare
773:"I'm putting my data in Google and HealthVault"
529:Addresses in early 2010 expanded his audience.
574:), that got featured on the TED.com platform.
8:
757:20 People Who Make Healthcare Better in 2009
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506:In July, the annual Best Hospitals issue of
50:Learn how and when to remove these messages
328:(born February 18, 1950), widely known as
94:about living persons that is unsourced or
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409:deBronkart at the Medicine 2.0 Conference
302:Learn how and when to remove this message
284:Learn how and when to remove this message
231:Learn how and when to remove this message
165:Learn how and when to remove this message
924:. Medicine20congress.com. Archived from
875:. Medicine20congress.com. Archived from
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192:contains content that is written like
802:Electronic Health Records Raise Doubt
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959:"MD PNP Program | FDA Workshop"
897:Schedule of conferences and meetings
703:Hoch, D; Ferguson, T (August 2005).
539:Institute for Healthcare Improvement
401:Advocate for personal health records
358:Beth Israel Deaconess Medical Center
705:"What I've learned from E-patients"
464:medical technology specialists say.
554:In June, at the annual meeting of
372:Discovering the e-Patient movement
14:
1164:People from Nashua, New Hampshire
572:Radboud University Medical Center
336:and personal health data rights.
31:This article has multiple issues.
655:, The Health Care Blog, 10/28/08
562:In April 2011 he gave a talk at
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39:or discuss these issues on the
1134:The New Life of e-Patient Dave
1003:, May 22, 2010, Washington, DC
816:, Boston Globe, April 18, 2009
804:, Boston Globe, April 13, 2009
653:e-Patient Dave tells his story
578:Healthcare Quality Improvement
387:The New Life of e-Patient Dave
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1038:e-Patient Dave (2010-03-08).
1016:TEDxMaastricht (2007-01-03).
1169:Activists from New Hampshire
859:, Boston Globe, May 18, 2009
722:10.1371/journal.pmed.0020206
643:blog post by Dave deBronkart
509:U.S. News & World Report
326:Richard Davies deBronkart Jr
72:biography of a living person
99:must be removed immediately
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1042:. Patientdave.blogspot.com
873:"Medicine 2.0'09 Schedule"
1159:American health activists
1130:- the ePatient whitepaper
321:Portrait by Roger Ramirez
693:magazine, September 2009
429:reports, and allergies.
911:, US News, July 9, 2009
899:on deBronkart's website
680:"Patient of the Future"
383:Thomas William Ferguson
363:His kidney was removed
314:American cancer patient
256:Some of this article's
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334:participatory medicine
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86:Please help by adding
857:The Excellent Patient
619:Nashua, New Hampshire
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340:Disease and treatment
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213:neutral point of view
381:White Paper" by Dr.
350:renal cell carcinoma
92:Contentious material
1079:"laughsingbook.com"
826:Health 2.0 Meets Ix
775:, blog post 2/27/09
587:quality improvement
348:(stage IV, grade 4
205:promotional content
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274:August 2014
261:may not be
221:August 2014
155:August 2014
1143:Categories
1110:2013-08-18
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976:. Icsi.org
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883:2013-08-18
625:References
354:CompuServe
201:improve it
125:newspapers
36:improve it
1020:. Ted.com
452:the Globe
443:The Globe
427:radiology
379:e-Patient
77:citations
42:talk page
997:Archived
847:12/24/09
829:Archived
741:16060721
709:PLOS Med
683:Archived
667:, 2/3/09
612:Personal
570:(of the
263:reliable
103:libelous
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139:scholar
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524:CNN
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