opening keynote at aanp 2014
TRANSCRIPT
JAMIA, 1997
“e-Patient Dave” deBronkartTwitter: @ePatientDave
facebook.com / ePatientDaveLinkedIn.com / in / ePatientDave
[email protected] Skype: ePatientDave
Let Patients HelpHeal Healthcare
Learning Objectives• State three examples of what the “e” in
e-patient stands for.
• Name two fundamental assets the internet lets patients access, which alter what they can contribute in healthcare
• State who, according to Slack & Safran, is the most under-utilized resource in healthcare
How I came to be here• High tech marketing• Data geek; tech trends; automation• 2007: Cancer discover & recovery
• 2008: E-Patient blogger
• 2009: ParticipatoryMedicine, Public Speaker
• 2010: full time
• 2011: international
“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 MDTestimony to the House Ways & Means subcommittee on health, 2004
e-Patients.net founderTom Ferguson MD1944-2006
EquippedEngagedEmpoweredEnabled”
Doc Tom said,“e-Patients are
“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.”
Pt of future
10
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
“Yourshoulderwillbefine…butthere’ssomethinginyourlung”
Primary Tumor: Kidney
Classic Stage IV, Grade 4
Renal Cell Carcinoma
Illustration on the drug company’s
web site
Median Survival:24 weeks
Facing the Reaper
My mother
My daughter
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
E-Patient Activity 3:Reading (and sharing)
my hospital data online
Surgery & Interleukin worked.Target Lesion 1 – Left Upper Lobe
Baseline: 39x43 mm 50 weeks: 20x12 mm
25
26
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.
Because of the Web, Patients Can Connect to Information and Each Other (and other Providers)
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 bemore dangerous
not to googleyour 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
Urgency:The Demographic
Crunch
Problem(?)Chronic Disease Epidemic
CDC(2004)TenGreatPublicHealthAchievementsinthe20th Century&LeadingCausesofDeathJones(2012)TheBurdenofDiseaseandtheChangingTaskofMedicine.NEJM
UsedwithpermissionofJohnO.MooreMD,PhDnewmed.media.mit.edu
Problem(?)Chronic Disease Epidemic
CDC(2004)TenGreatPublicHealthAchievementsinthe20th Century&LeadingCausesofDeathJones(2012)TheBurdenofDiseaseandtheChangingTaskofMedicine.NEJM
UsedwithpermissionofJohnO.MooreMD,PhDnewmed.media.mit.edu
My classmate Jay
Half of everyone who’s ever been 65 is alive today
Population today: ~7.0 billionEnd of World War II: ~2.3 billion
People perform betterwhen they’re
informed better.
It’s perverseto keep people
in the dark
and call them ignorant
Corollary:
Khan AcademyHigh quality medical information – free!
And finally:recognition
from the establishment
Institute of Medicine – Sept 2012Major New Report: “Best Care at Lower Cost”
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.
June 11, 2014
June 11, 2014• Patient advisory panel
• Patient peer review of research papers
• Authors are to document how they involved patients in defining the question and outcome measures
Wil l iam Gibson
“The future is here –it’s just not evenly distributed yet”
October 2007
2.8 e-Patient Years in Pictures…December 2006 May 2009
Thank youfor your training
and the workyou do.
JAMIA, 1997
“e-Patient Dave” deBronkartTwitter: @ePatientDave
facebook.com / ePatientDaveLinkedIn.com / in / ePatientDave
[email protected] Skype: ePatientDave
Let Patients HelpHeal Healthcare