connecticut hospital association nursing leadership forum 10-29-15
TRANSCRIPT
JAMIA, 1997
“e-Patient Dave” deBronkartTwitter: @ePatientDavefacebook.com / ePatientDaveLinkedIn.com / in / [email protected] Skype: ePatientDave
Transforming Healthcare: Listening to
the Patient’s Voice
How I came to be here• High tech marketing• Data geek; tech trends; automation• 2007: Cancer discovery & recovery
• 2008: E-Patient blogger
• 2009: ParticipatoryMedicine, Public Speaker
• 2010: full time
• 2011: international
e-Patients.net founderTom Ferguson MD1944-2006
EquippedEngagedEmpoweredEnabled”
Doc Tom said,“e-Patients are
Pt of future
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 weddingsin the U.S. met online
– 2011: One in five couplesmet online
The Engaged Patient12 items in my pre-appointment “agenda” email
The Incidental FindingRoutine shoulder x-ray, Jan. 2, 2007
“Your&shoulderwill&be&fine&…but&there’s&something&in&your&lung”
Primary Tumor: Kidney
E-Patient Activity 1:Researching my condition
Classic Stage IV, Grade 4
Renal Cell Carcinoma
Illustration on the drug company’s
web site
Median Survival:24 weeks
After the shockyou’re left with the question:
What are my options?What can I do?
Get engaged.
Get it in gear.
Do everything you can.
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
Question:
How can it be
that the most usefuland relevant and
up-to-the-minute information
can exist outside of traditional channels?
�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 worldto look for such things.
The time it takes after successful research is completedbefore 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)
Because of the Web, Patients Can Connect to Information and Each Other (and other Providers)
this&
animations
Closed&system Open&network
Transformation&of&Knowledge&Access
Social'media'act'as'“Information'capillaries”
Slide&by&@ePatientDave&2015&based&on&Engelen&&&Derksen&2010&at
2012:Big-time
acceptanceby the
establishment
Institute of Medicine – Sept 2012Major New Report: “Best Care at Lower Cost”
Googlingis a sign of an
engaged patient!
Predictably,the empire starts
to strike back.
Predictably,the empire starts
to strike back.
It can look ludicrous.
Post&on&LinkedIn:dave.pt/belgiangoogle2The&ad&videos:dave.pt/belgiangoogle3dave.pt/belgiangoogle4
Reported June 2015
Reported June 2015
“How can patients participate if they can’t see what I see?” – Dr. Danny Sands
But remember –information alone
doesn’t change behavior
WithingsWithings WiGFi&scale
Fitness&wristband&&&heart&band
WithingsWithings WiGFi&scale
Fitness&wristband&&&heart&bandYMCA&Diabetes&Prevention&Class(food&training&&&physical&activity)
MyFitnessPal diet&tracking&appStrong&support&from&my&spouse
My doctors can’t see this in their computers!
Yes, the IOM itselfsays e-patients are an
essential part of tomorrow’s healthcare.
Patient-Clinician PartnershipsEngaged, 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.
Gorgeous Design
The Users’ Dream
Gorgeous Design
You don’t dopatient engagement
to people.
It’s a with thing.
E-Patient 101:
“I’m the kind of patientwho likes to understand
as much as I canabout my health.”
E-Patient 101:
“Can you help me understand more?”“Are there any sitesyou recommend?”
Next Lesson:Get Involved in Your Data.
Quality Matters.
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.”
“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.”
@XeniLive 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.”
@XeniNext day: 12-19-2011
“My patients aren’t like that.”
“They aren’t asking for this.”
Objection:
Paternalistic caring
“No, honey –you don’t know what you need.”
“I’ll take care of you.”
Sensible – up to a point
“I’ll decide for you.”
What do we mean by
Empowered?
Empowerment“Increasing the capacity of individuals or groups
to make choices [about what they want]
and to transform those choices into desired actions & outcomes”
World Bank, 2002
October 2007
2.8 e-Patient Years in Pictures…December 2006 May 2009
JAMIA, 1997
“e-Patient Dave” deBronkartTwitter: @ePatientDavefacebook.com / ePatientDaveLinkedIn.com / in / [email protected] Skype: ePatientDave
Transforming Healthcare: Listening to
the Patient’s Voice
Extras that came upduring Q&A:
We all wantreliable information.
What do we assumeabout where to get it
and what to avoid?
The literature?
Not according tothe editors.
After 30 years of practicing peer review and 15 years of studying it experimentally, I’m unconvinced of its value.
Evidence on the upside of peer review is sparse, whereas evidence on the downside is abundant.
Most of what appears in peer reviewed journals is scientifically weak.
Richard Smith, 25 year editorof the British Medical Journal, 2009
