"think, think, think": e-patient dave address to ecpc annual meeting
TRANSCRIPT
“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave [email protected]
Amazing changes in who has information
are giving patients power
1
How I came to be here • Business: 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
Institute of Medicine – Sept 2012 Major New Report: “Best Care at Lower Cost”
The IOM 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.
When the center of a system changes,
everything in the system may need to be rebalanced
and rethought
The main question in every medical case:
“What is the best thing
to do?”
The answer depends on
information and judgment.
Information technology is changing
and patients have a voice in how to decide.
ì
mHealth puts knowledge in our pockets.
It changes what patients are able to do.
Caution: it’s starting to change
what patients WANT to do.
It builds capacity.
Change #1: How does information move
to the point of need?
Transformation of Knowledge Access “Information
artery”
Subject to clogs
and delays
The point of need
“E-Patient White Paper”
“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. Even when lives are at stake.
Dr. Lindberg: 400 years
2013: 1100 years
Social Media is like “information capillaries”
Closed system Open network
Transformation of Knowledge Access
Change #2: Where does
useful information come from?
Kardia (née “AliveCor”): Smartphone ECG
#DIYPS & @DanaMLewis (“Do-it-yourself Pancreas System”
#DIYPS (“Do-it-yourself Pancreas System”
“Quantified Self” #OpenAPS Public Health San Diego, May 18
(n=1)*59
(n=1)*59 June 3, White House: *75
Withings Withings Wi-Fi scale
Fitness wristband & heart band
YMCA Diabetes Prevention Class (food training & physical activity)
MyFitnessPal diet tracking app
Strong spousal support
My doctors can’t see this in their computers!
p.s.: My doctors can’t see this
in their computers!
OMG, I’m a runner now
Change #3: How do we decide
whether it is reliable?
Transformation of Knowledge Access “Information
artery”
Subject to clogs
and delays
The point of need
and pollution
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 editor of the British Medical Journal, 2009
Change #4: Who decides which factors
are important?
Who can say “We forgot to think about this”
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
“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.
impact on patients è è à à
à à à current patient involvement è
trial management, e.g. consent, patient information leaflets, �
trial adherence
patient recruitmente.g. providing information on clinical trials, advertising trials
clinical trial design
Dr. Bettina Ryll – researcher and family caregiver �
When should we bring patients�into the clinical trials process?
6/5/16
clinical question/ problem
Make sure patients are �doing things right à à à
ß ß ß Make sure researchers �are doing the right thing
© Bettina Ryll MD/PhD
September 29, 2014
September 29, 2014
• <meta name="article.headline” content=” “In a dramatic shift, patients are helping researchers design clinical trials of new drugs” />
Culture clash: What they wrote
Culture clash: In print
Change #5: Our understanding of what a disease is!
Ignaz Semelweiss (1818-1865) “Despite various publications of results where hand-washing reduced mortality to below 1%, Semmelweis’s observations conflicted with the established scientific and medical opinions of the time and his ideas were rejected by the medical community…
Microbes Koch’s postulates
125 years ago
Cancer Broken DNA 25 years ago
Personalized medicine Eric Dishman of Intel • Kidney cancer age 19
– Prognosis: 9 months (wrong)
• 2010: genome sequenced – Took seven months
• “Your cancer is in your kidney but it acts like pancreatic. New chemo.”
• Three months later: clear!
Personalized medicine Eric Dishman of Intel National Institutes of Health
Notice: It’s clear that patients
are not setting the priorities here
Change #6: After you learn a medical fact,
how long does it continue to be true?
Arbesman half-life of facts
Arbesman half-life of facts
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.
Reported June 2015
Reported June 2015
“A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die,
Nobel Prize winner Max Planck
and a new generation grows up that is familiar with it.”
Change #7: Who is capable
of making these decisions about priorities?
Paternal care
“No, honey – you don’t know what you need.”
“I’ll take care of you.”
It’s important – up to a point
“I’ll decide for you.”
Zoe When does autonomy become appropriate?
Empowerment An empowering approach �
treats patients as co-producerswith authority and control �at the lowest possible level.
And that’s just a start. 1. How information moves to the point of need 2. Where useful information arises 3. How do we decide whether it’s reliable? 4. How do we decide what to measured? 5. Our understanding of what a disease is! 6. How long does an answer stay stable? 7. Who is capable of deciding all this? 8. … to be continued
The main question in every medical case:
“What is the best thing
to do?”
The answer depends on
information and judgment.
mHealth puts knowledge in our pockets.
It changes what patients are able to do.
It’s starting to change what patients WANT to do.
The IOM 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.
@MightyCasey, e-patient
“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave [email protected]
Amazing changes in who has information
are giving patients power
79