Download - Talk to Seattle Rotary, Sept. 24, 2014
![Page 1: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/1.jpg)
“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave [email protected]
Let Patients Help Heal Healthcare.
1
Note my branding
![Page 2: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/2.jpg)
How I came to be here • High tech marketing • Data geek; tech trends; automation • 2007: Cancer discover & recovery
• 2008: E-Patient blogger
• 2009: Participatory Medicine, Public Speaker
• 2010: full time
• 2011: international
![Page 3: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/3.jpg)
“It can be argued that the largest yet most neglected health care resource, worldwide, is the patient…”
![Page 4: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/4.jpg)
e-Patients.net founder Tom Ferguson MD 1944-2006
Equipped Engaged Empowered Enabled�
Doc Tom said, �e-Patients are
![Page 5: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/5.jpg)
Classic Stage IV, Grade 4
Renal Cell Carcinoma
Illustration on the drug company's
web site
Median Survival: 24 weeks
![Page 6: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/6.jpg)
�My doctor prescribed ACOR� (Community of my patient peers)
![Page 7: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/7.jpg)
ACOR patients 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
![Page 8: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/8.jpg)
Surgery & Interleukin worked. Target Lesion 1 – Left Upper Lobe
Baseline: 39x43 mm 50 weeks: 20x12 mm
![Page 9: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/9.jpg)
![Page 10: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/10.jpg)
Question:
![Page 11: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/11.jpg)
How can it be
that the most useful and relevant and
up-to-the-minute information
can exist outside of traditional channels?
![Page 12: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/12.jpg)
“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
![Page 13: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/13.jpg)
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.
![Page 14: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/14.jpg)
Because of the Web, Patients Can Connect to Information and Each Other (and other Providers)
![Page 15: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/15.jpg)
Compare with
- “To Err is Human” (98,000 deaths/yr Nov 1999)
Death by Googling: Not. (Dr. Gunther Eysenbach, Germany: 0 deaths found in a three year search)
- HHS Inspector General (15,000/mo Nov 2010)
![Page 16: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/16.jpg)
“It may be more dangerous
not to google your condition.”
![Page 17: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/17.jpg)
“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.
![Page 18: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/18.jpg)
Web 2.0: “When the web began to harness the intelligence of its users.” – Tim O’Reilly
![Page 19: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/19.jpg)
“Liquidity” transforms
what’s possible
![Page 20: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/20.jpg)
Not liquid • Moving it takes effort
• Slow and predictable
• Arrivals on unexplained “tracks” are suspicious
• Frictionless – controlling the flow takes effort
• Fast and unpredictable
• “Tracks” are everywhere
Liquid
![Page 21: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/21.jpg)
![Page 22: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/22.jpg)
Wall Street Journal, June 10
![Page 23: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/23.jpg)
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.
![Page 24: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/24.jpg)
![Page 25: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/25.jpg)
“How can patients participate if they can’t see what I see?” – Dr. Danny Sands
![Page 26: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/26.jpg)
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
![Page 27: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/27.jpg)
This movement is a cultural revolution.
![Page 28: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/28.jpg)
You know it’s a revolution
when the artists and musicians show up.
![Page 29: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/29.jpg)
Regina Holliday’s “Walking Gallery of Healthcare”
![Page 30: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/30.jpg)
Keith Boone @Motorcycle_Guy “the e-Patient Rap”
![Page 31: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/31.jpg)
EDITED FROM THE USUAL!!! No ovals
![Page 32: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/32.jpg)
“Gimme My DaM Data”
![Page 33: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/33.jpg)
Problem(?) Chronic Disease Epidemic
CDC#(2004)#Ten#Great#Public#Health#Achievements#in#the#20th#Century#&#Leading#Causes#of#Death#
Jones#(2012)#The#Burden#of#Disease#and#the#Changing#Task#of#Medicine.#NEJM%
Used#with#permission#of#John#O.#Moore#MD,#PhD#####newmed.media.mit.edu#
White box
![Page 34: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/34.jpg)
Problem(?) Chronic Disease Epidemic
CDC#(2004)#Ten#Great#Public#Health#Achievements#in#the#20th#Century#&#Leading#Causes#of#Death#
Jones#(2012)#The#Burden#of#Disease#and#the#Changing#Task#of#Medicine.#NEJM%
Used#with#permission#of#John#O.#Moore#MD,#PhD#####newmed.media.mit.edu#
White box
34
![Page 35: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/35.jpg)
My classmate Jay
![Page 36: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/36.jpg)
Half of everyone who’s ever been 65 is alive today
Population today: ~7.0 billion End of World War II: ~2.3 billion
![Page 37: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/37.jpg)
0.2% 0.1% 0.3%
. . . . . . . . . . . . . . .
. .
US population 152.3 million 85+: 457k
Source 1: http://www.census.gov/population/projections/files/downloadables/NP2012_D1.csv
![Page 38: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/38.jpg)
0.3% 0.2% 0.5%
. . . . . . . . . . . . . . .
. .
US population 180.7 million 85+: 904k
Source 1: http://www.census.gov/population/projections/files/downloadables/NP2012_D1.csv
![Page 39: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/39.jpg)
0.4% 0.2% 0.6%
. . . . . . . . . . . . . . . .
.
US population 205.0 million 85+: 1.23 million
Source 1: http://www.census.gov/population/projections/files/downloadables/NP2012_D1.csv
![Page 40: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/40.jpg)
0.7% 0.3% 1.0%
. . . . . . . . . . . . . . .
. .
US population 227.2 million 85+: 2.27 million
Source 1: http://www.census.gov/population/projections/files/downloadables/NP2012_D1.csv
![Page 41: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/41.jpg)
0.9% 0.3% 1.2%
. . . . . . . . . . . . . . .
. .
US population 249.5 million 85+: 2.99 million
Source 1: http://www.census.gov/population/projections/files/downloadables/NP2012_D1.csv
![Page 42: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/42.jpg)
1.0% 0.5% 1.5%
. . . . . . . . . . . . . . .
. .
US population 282.2 million 85+: 4.23 million
Source 2: http://www.census.gov/popest/data/intercensal/national/tables/US-EST00INT-01.xls
![Page 43: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/43.jpg)
1.1% 0.6% 1.7%
. . . . . . . . . . . . . . .
. .
US population 309.3 million 85+: 5.26 million
Source 2: http://www.census.gov/popest/data/intercensal/national/tables/US-EST00INT-01.xls
![Page 44: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/44.jpg)
1.3% 0.7% 2.0%
. . . . . . . . . . . . . . .
. .
US population 333.9 million 85+: 6.68 million
Source 3: http://www.census.gov/population/projections/files/downloadables/NP2012_D1.csv
![Page 45: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/45.jpg)
1.5% 0.9% 2.4%
. . . . . . . . . . . . . . .
. .
US population 358.5 million 85+: 8.60 million
Source 3: http://www.census.gov/population/projections/files/downloadables/NP2012_D1.csv
![Page 46: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/46.jpg)
2.3% 1.4% 3.7%
. . . . . . . . . . . . . . .
. .
US population 380.0 million 85+: 14.1 million
Source 3: http://www.census.gov/population/projections/files/downloadables/NP2012_D1.csv
![Page 47: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/47.jpg)
2.7% 1.7% 4.4%
. . . . . . . . . . . . . . .
. .
US population 399.8 million 85+: 17.6 million
Source 3: http://www.census.gov/population/projections/files/downloadables/NP2012_D1.csv
![Page 48: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/48.jpg)
The times call for
committed action.
![Page 49: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/49.jpg)
The lives and well-being of
(y)our families are at stake.
![Page 50: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/50.jpg)
The movement needs competent middle managers.
![Page 51: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/51.jpg)
At SPM we need capable middle managers to … • Define a deliverable people would find useful
– Starter: what would you find useful?
• Frame out a plan to make it happen
• Pull together a small team to do it • Sit on it until it’s hatched
• Iterate to ecstasy!
![Page 52: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/52.jpg)
Top-of-head project ideas we know would be valuable
1. Create “newbie to-do” tip sheets
• “Where do I start? What are my simple to-do’s?” – For patients and for clinicians
• Gathering and managing your health records
• For docs: how to let patients help
![Page 53: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/53.jpg)
More top-of-head ideas we know would be valuable
2. Programs for marketers and movement kindlers • Design a public awakening campaign:
what would be effective to tell people?
• Spread the word – dissemination
![Page 54: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/54.jpg)
More top-of-head ideas we know would be valuable
3. Programs for data geeks
• Data quality awareness and best practices (workflow matters; resilient systems…)
• Anything to help (or disrupt) the HIT nerds
![Page 55: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/55.jpg)
More! top-of-head ideas we know would be valuable
4. Sociology / community
• Analyzing what’s happening in the movement and what could be happening
• Figure out how some patient communities get great and some don’t. Can we bottle it?
![Page 56: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/56.jpg)
Do you want to help create this new world?
![Page 57: Talk to Seattle Rotary, Sept. 24, 2014](https://reader033.vdocuments.us/reader033/viewer/2022051513/547d207a5906b589378b4603/html5/thumbnails/57.jpg)
“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave [email protected]
Let Patients Help Heal Healthcare.
57
Note my branding