e-patient dave's talk at nqf annual meeting feb 13, 2014
DESCRIPTION
Opening to National Quality Forum, on developing quality measures that matter to patientsTRANSCRIPT
JAMIA, 1997
“e-Patient Dave” deBronkart Twitter: @ePatientDave
facebook.com / ePatientDave LinkedIn.com / in / ePatientDave
[email protected] Skype: ePatientDave
Let Patients Help Heal Healthcare
“I want to note especially the importance of the resource
that is most often under- utilized in our information systems –
our patients”
Charles Safran MD, Beth Israel Deaconess quoting his colleague, Warner Slack MD Testimony to the House Ways & Means subcommittee on health, 2004
Institute of Medicine – Sept 2012 Major New Report: “Best Care at Lower Cost”
Yes, the IOM itself says e-patients are an
essential part of tomorrow’s healthcare.
Patient-Clinician Partnerships Engaged, empowered patients— A learning health care system is anchored on patient needs and perspectives and promotes the inclusion of patients, families, and other caregivers as vital members of the continuously learning care team.
How I came to be here
• High tech marketing • Data geek; tech trends; automation • 2007: Cancer discovery & recovery
• 2008: E-Patient blogger
• 2009: Participatory Medicine, Public Speaker
• 2010: full time
• 2011: international
Animations removed
e-Patients.net founder Tom Ferguson MD 1944-2006
Equipped Engaged Empowered Enabled”
Doc Tom said, “e-Patients are
JAMIA, 1997
Pt of future
2007: My “Incidental Finding” Routine shoulder x-ray, Jan. 2, 2007
“Your shoulder will be fine … but there's something in your lung”
Multiple tumors in both lungs Where’s This From??
Classic Stage IV, Grade 4
Renal Cell Carcinoma
Illustration on the drug company's
web site
Median Survival: 24 weeks
E-Patient Activity 1: Researching my condition
E-Patient Activity 2: “My doctor prescribed ACOR”
(Community of my patient peers)
ACOR members told me:
• This is an uncommon disease – get to a hospital that does a lot of cases
• There’s no cure, but HDIL-2 sometimes works. – When it does, about half the time it’s permanent – The side effects are severe.
• Don’t let them give you anything else first
• Here are four doctors in your area who do it – And one of them was at my hospital
Surgery & Interleukin worked. Target Lesion 1 – Left Upper Lobe
Baseline: 39x43 mm 50 weeks: 20x12 mm
AMAZING surgery! AMAZING treatment AMAZING care
Question:
How can it be
that the most useful and relevant and
up-to-the-minute information
can exist outside of traditional channels?
Because of the Web, Patients Can Connect to Information and Each Other (and other Providers)
“If I read two journal articles every night, at the end of a year I’d be 400 years behind.”
It’s not humanly possible to keep up.
Dr. Lindberg: 400 years
The lethal lag time: 2-5 years
During this time, people who might have benefitted can die.
Patients have all the time in the world to look for such things.
The time it takes after successful research is completed before publication is completed and the article’s been read.
Compare with
“To Err is Human” (98,000 deaths/yr Nov 1999)
Death by Googling: Not. (Dr. Gunther Eysenbach, Europe: 0 deaths found in a three year search)
“It may be more dangerous
not to google your condition.”
“These conclusions are no more anti-doctor
or anti-medicine
than Copernicus and Galileo were anti-astronomer.”
Patients can simply contribute more today than in the past.
Web 2.0: “When the web began to harness the intelligence of its users.” – Tim O’Reilly
Institute of Medicine – Sept 2012 Major New Report: “Best Care at Lower Cost”
Can we measure…
“Engaged, empowered patients”?
© 2008 University of Oregon 28
What Does it Mean to Be Activated ?
© 2008 University of Oregon 29
Ac$va$on Level is Predic$ve of Behaviors
Research consistently finds that those who are more ac$vated are:
– Engaged in more preven$ve behaviors
– Engaged in more healthy behaviors
– Engaged in more disease specific self-‐management behaviors
– Engaged in more health informa$on seeking behaviors
© 2008 University of Oregon 30
Ac$va$on is developmental
Source: J.Hibbard, University of Oregon
© 2008 University of Oregon 31
Behaviors in Medical Encounter by Ac$va$on Level
Can we measure…
What the IOM recommends??
© 2008 University of Oregon 33
© 2008 University of Oregon 34
Can we measure…
Accurate, careful management
of important information?
“Now I know why docs don’t give you scan data. I see the Virgin Mary, Jimmy Hoffa, several forks, and Saddam’s yellowcake hiding in my guts.”
“And this CT scan makes my butt look big.”
@Xeni Live tweeting, 12-18-2011
“So I figure out how to open my bone scan data. I look.”
“What the...” “What’s that ****-shaped ghost-shadow thing— it looks like I have a penis!”
“I call a hacker pal. ‘That, Xeni, is a ****.’” “I look at metadata more carefully. THEY GAVE ME THE WRONG DATA. SOME OTHER DUDE’S SCANS.”
@Xeni Next day: 12-19-2011
Pre-op: “At least you won’t be lopsided.” “What do you mean?” “You’re getting a bilateral mastectomy.” “No I’m not!” “That’s what came to us on this paper.”
Who has the most at stake
with the accuracy, completeness and
availability of the medical record?
Data quality is essential.
Let Patients Help.
Can we measure…
Dissemination of new knowledge?
Patients assume ���their clinicians know and use ���the best available methods.
Physician adoption of new practices years after discovery The “17 years” thing From A. Balas, Institute of Medicine, in Yearbook of Medical Informatics 2000
Flu vaccine, year 32: 55% doing it, 45% still not
Beta blockers, year 18: 62% doing it, 38% still not
Diabetic foot care, year 7: 20% doing it, 80% still not
Cholesterol, year 16: 65% doing it, 35% still not
Creative Commons Attribution / Share-Alike May be distributed with this license included
Scurvy
264 ���years!
From The Fourth Paradigm by Microsoft Research
“My patients aren’t like that.”
“They aren’t asking for this.”
Objection:
“Changing culture is harrrrrrd.”
Objection:
That’s why they call it leadership.
“Anchored on patient needs
and perspectives”
Gorgeous, wonderful new book by Parkinson patients
Scientists talk about the biology of a disease.
Patients talk about living with it.
http://dave.pt/pccbook
Who gets to say what’s important?
The patient authors of the book
October 2007
2.8 e-Patient Years in Pictures December 2006 May 2009
JAMIA, 1997
“e-Patient Dave” deBronkart Twitter: @ePatientDave
facebook.com / ePatientDave LinkedIn.com / in / ePatientDave
[email protected] Skype: ePatientDave
Let Patients Help Heal Healthcare