Discovering the e-Patient Movement - Hospital Council of … · 2019-12-19 · Discovering the...
Transcript of Discovering the e-Patient Movement - Hospital Council of … · 2019-12-19 · Discovering the...
“e-Patient Dave” deBronkart Twitter: @ePatientDave
facebook.com/ePatientDave LinkedIn.com/in/ePatientDave
Discovering the e-Patient Movement:
How Patient Engagement Can Improve Safety and Quality
“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
How I came to be here today
• High tech marketing (graphic arts)
• Data geek; tech trends; automation
• 2007: Cancer kicker 2008: E-Patient blogger
• 2009: – Society for
Participatory Medicine – Public speaking – Washington
• 2010: Full time
e-Patients.net founder Tom Ferguson MD 1944-2006
Equipped
Engaged Empowered Enabled”
Doc Tom said, “e-Patients are
Me? An indicator of the future??
• Who’s getting online: – 1989: Me (CompuServe sysop) – 2009: 83% of US adults (Pew)
• Who’s romancing online: – 1999: I met my wife (Match.com)
– 2009: One in eight weddings in the U.S. met online
– 2011: One in five couples met online
The 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??
Primary Tumor: Kidney
Facing the Reaper
My mother
My daughter
Get engaged.
Get it in gear.
Do everything you can.
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
Classic Stage IV, Grade 4
Renal Cell Carcinoma
Illustration on the drug company’s
web site
Median Survival: 24 weeks
E-Patient Activity 3: Reading (and sharing)
my hospital data online
E-Patient Activity 4: My own social support network
(CaringBridge.org - family and friends - journal & guestbook)
E-Patient Activity 5: Tracking my Data
During a serious disease, the chance to be engaged (or to help) is a huge mood booster, infinitely better than “I’m helpless / there’s nothing I can do”
Surgery & Interleukin worked. Target Lesion 1 – Left Upper Lobe
Baseline: 39x43 mm 50 weeks: 20x12 mm
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 to Doctors)
“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)
“Arguably it’s 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.
“E” is not a new idea • Doctor Spock’s Baby and Child Care (1946)
• Our Bodies, Ourselves (1973) “We weren't encouraged to ask questions,
but to depend on the so-called experts,” Hawley told Women’s eNews.
“Not having a say in our own health care frustrated and angered us. We didn't have the information we needed, so we decided to find it on our own.”
So, how’s that workin’ out??
Can we make it easier to do
the right thing?
Announced this past Monday
• 99% of patients wanted to continue
• 17-26% of docs preferred not to… – But when given the chance to stop, none did
• 85-89% of patients said availability of open notes would influence their choice of providers and health plans
Obstacle to adoption:
“But patients don’t understand
this stuff.”
If the data’s unclear let’s MAKE it clear
Like other industries do.
Thomas Goetz, Wired
Thomas Goetz, Wired “It’s time to redesign medical data”
Same data – better software
Psoas muscle (My kidney tumor was encroaching on it) my rendering on VisibleBody.com
Why not “Google Earth for my body”?
Web 2.0: “When the web began to harness the intelligence of its users” – Tim O’Reilly
Compliance (Whose goal is it, anyway?)
Peter Margolis, Cincinnati Children’s
.5 x .5 = .25
Are we barking up the wrong tree?
Used with permission
Used with permission
Behavioral Economics • Loss aversion is stronger
than the desire to gain
• Cognitive framing; anchoring; ...
• But it’s tricky
• Even for really self-aware people, it’s not as easy as just giving them facts.
• That’s important for medicine.
Lesson learned: Genuine value can arise today
in places where it didn’t, years ago.
Exhibit: Duane Smith /
Gawande
What if his family had googled “splenectomy”?
What if the care team had shared the care plan?
Abington Memorial created one. (It’s just an EMR report)
Exhibit: Life-saving advice on my side effects
“Side effects are often severe and rarely fatal,
and include: ...”
Remedy: Ask my peers
17 first hand stories
Me: “Did being an engaged patient save me?”
Dr. McDermott: “I have no doubt the medicine
killed the tumors.” “But I don’t know if you could have
tolerated enough to do the job if you hadn’t gotten so involved”
Exhibit: Family and Nurse
Awareness of Standards of Care
How to start? Here’s the
magic incantation
“I’m the kind of patient
who likes to understand
as much as I can
about my health.”
“Could I ask some questions?”
You know it’s a movement
when…
Regina Holliday’s Medical Mural Advocacy Project
The Walking Gallery ReginaHolliday.blogspot.com
on.TED.com/Dave “Let Patients Help”
Amazingly, concerned and activated families
do look for health information!
It’s the e-Patient
MOVIE Video link:
bit.ly/DataSong
Click picture to view video at bit.ly/DataSong
And finally: recognition
from the establishment
Institute of Medicine – Sept ’12 Major new report: “Best Care at Lower Cost”
October 2007
2.8 e-Patient Years in Pictures… December 2006 May 2009
“e-Patient Dave” deBronkart Twitter: @ePatientDave
facebook.com/ePatientDave LinkedIn.com/in/ePatientDave
Discovering the e-Patient Movement:
How Patient Engagement Can Improve Safety and Quality
Who’s online
Hugo Campos wants his ICD data
Full, unrestricted & convenient access.
Doctor Experience
Patient Experience
$99 Activity Fitbit
$129 Blood Pressure Withings BP Monitor
Weight Withings WiFi Scale
$159
$149 Sleep Zeo Sleep Manager
No data
Implanted Cardiac Defibrillator
$30,000