dartmouth summer institute for informed pt choice (let patients help decide what matters)
DESCRIPTION
30 minute talk at the Dartmouth Summer Institute on Informed Patient Choice. Very unusual talk - almost nothing about my cancer, lots about issues of who gets to say what's important.TRANSCRIPT
“e-Patient Dave” deBronkart Twitter: @ePatientDave
Let Patients Help Decide What
Matters
facebook.com/ePatientDave LinkedIn.com/in/ePatientDave
“It can be argued that the largest yet most neglected health care resource, worldwide, is the patient…”
Patients are the ultimate stakeholder
Yet they’re often excluded from discussing
ANYthing
What Glover observed was not caused by modern insurance
What could be said
that would make any difference?
To whom would you say it?
e-Patients.net founder Tom Ferguson MD 1944-2006
Equipped Engaged Empowered Enabled”
Doc Tom said, “e-Patients are
“E” is not a new idea • Doctor Spock’s Baby and Child Care (1946)
“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.”
Fast version
Who gets to say what’s important??
Who gets to say which outcomes are important??
Who gets to say which outcomes should be goals?
Who gets to declare which
endpoint we measure?
Who gets to say what’s in the patient’s best
interest?
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.”
19
“How can patients participate if they can’t see what I see?” – Dr. Danny Sands
The Incidental Finding Routine shoulder x-ray, Jan. 2, 2007
“Your shoulder will be fine … but there’s something in your lung”
Classic Stage IV, Grade 4
Renal Cell Carcinoma
Illustration on the drug company’s
web site
Median Survival: 24 weeks
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 24
Keeping patients in the dark, #1
IL-2?
Keeping patients in the dark, #2
Open surgery vs. laparoscopic
Case: Elyse Chapman
Case: Elyse Chapman
Keeping patients in the dark, #3
Option: Watchful Waiting
Can you keep someone in the dark
if you don’t KNOW what you’re
not telling them?
Keeping patients in the dark, #4
Vaginal hysterectomy
Keeping patients in the dark, #5
IL-2 (again)
What’s changed since Arrow’s day?
Problem: Patients may not
find value in all the technical details
(In other words, to them, the
discussion wasn’t patient centered)
“Ultimately, it turned out to be the trade-off between peeing better and sex.”
“And when it was stated in those terms, SDM flowed into the conversation.”
Let patients help say which outcomes
are important
Clarity is power.
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”
People perform better when they’re
informed better.
It’s perverse to keep people
in the dark
and call them ignorant
Corollary:
“My patients aren’t like that.”
“They aren’t asking for this.”
Objection:
Urgency: The Demographic
Crunch
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
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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
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52
My classmate Jay
Half of everyone who’s ever been 65 is alive today
Population today: ~7.0 billion End of World War II: ~2.3 billion
Let Hippies Help
Institute of Medicine – Sept 2012 Major New Report: “Best Care at Lower Cost”
Yes, 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.
June 11, 2014
Announced –
• Patient advisory panel
• Patient peer review of research papers
• Authors are to document how they involved patients in defining the question and outcome measures
www.bmj.com/content/348/bmj.g3726
Wil l iam Gibson
“The future is here – it’s just not evenly distributed yet”
“e-Patient Dave” deBronkart Twitter: @ePatientDave
Let Patients Help Decide What
Matters
facebook.com/ePatientDave LinkedIn.com/in/ePatientDave