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
![Page 1: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/1.jpg)
“e-Patient Dave” deBronkart Twitter: @ePatientDave
Let Patients Help Decide What
Matters
facebook.com/ePatientDave LinkedIn.com/in/ePatientDave
![Page 2: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/2.jpg)
“It can be argued that the largest yet most neglected health care resource, worldwide, is the patient…”
![Page 3: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/3.jpg)
Patients are the ultimate stakeholder
Yet they’re often excluded from discussing
ANYthing
![Page 4: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/4.jpg)
![Page 5: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/5.jpg)
What Glover observed was not caused by modern insurance
![Page 6: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/6.jpg)
What could be said
that would make any difference?
To whom would you say it?
![Page 7: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/7.jpg)
e-Patients.net founder Tom Ferguson MD 1944-2006
Equipped Engaged Empowered Enabled”
Doc Tom said, “e-Patients are
![Page 8: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/8.jpg)
“E” is not a new idea • Doctor Spock’s Baby and Child Care (1946)
![Page 9: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/9.jpg)
![Page 10: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/10.jpg)
![Page 11: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/11.jpg)
“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
![Page 12: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/12.jpg)
![Page 13: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/13.jpg)
Who gets to say what’s important??
![Page 14: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/14.jpg)
Who gets to say which outcomes are important??
![Page 15: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/15.jpg)
Who gets to say which outcomes should be goals?
![Page 16: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/16.jpg)
Who gets to declare which
endpoint we measure?
![Page 17: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/17.jpg)
Who gets to say what’s in the patient’s best
interest?
![Page 18: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/18.jpg)
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.”
![Page 19: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/19.jpg)
19
![Page 20: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/20.jpg)
“How can patients participate if they can’t see what I see?” – Dr. Danny Sands
![Page 21: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/21.jpg)
The Incidental Finding Routine shoulder x-ray, Jan. 2, 2007
“Your shoulder will be fine … but there’s something in your lung”
![Page 22: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/22.jpg)
Classic Stage IV, Grade 4
Renal Cell Carcinoma
Illustration on the drug company’s
web site
Median Survival: 24 weeks
![Page 23: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/23.jpg)
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
![Page 24: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/24.jpg)
Surgery & Interleukin worked. Target Lesion 1 – Left Upper Lobe
Baseline: 39x43 mm 50 weeks: 20x12 mm 24
![Page 25: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/25.jpg)
Keeping patients in the dark, #1
IL-2?
![Page 26: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/26.jpg)
Keeping patients in the dark, #2
Open surgery vs. laparoscopic
![Page 27: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/27.jpg)
Case: Elyse Chapman
![Page 28: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/28.jpg)
Case: Elyse Chapman
![Page 29: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/29.jpg)
Keeping patients in the dark, #3
Option: Watchful Waiting
![Page 30: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/30.jpg)
Can you keep someone in the dark
if you don’t KNOW what you’re
not telling them?
![Page 31: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/31.jpg)
Keeping patients in the dark, #4
Vaginal hysterectomy
![Page 32: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/32.jpg)
Keeping patients in the dark, #5
IL-2 (again)
![Page 33: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/33.jpg)
![Page 34: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/34.jpg)
What’s changed since Arrow’s day?
![Page 35: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/35.jpg)
![Page 36: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/36.jpg)
Problem: Patients may not
find value in all the technical details
![Page 37: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/37.jpg)
(In other words, to them, the
discussion wasn’t patient centered)
![Page 38: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/38.jpg)
“Ultimately, it turned out to be the trade-off between peeing better and sex.”
![Page 39: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/39.jpg)
“And when it was stated in those terms, SDM flowed into the conversation.”
![Page 40: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/40.jpg)
Let patients help say which outcomes
are important
![Page 41: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/41.jpg)
Clarity is power.
![Page 42: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/42.jpg)
If the data’s unclear let’s MAKE it clear
Like other industries do.
![Page 43: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/43.jpg)
Thomas Goetz, Wired
![Page 44: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/44.jpg)
Thomas Goetz, Wired “It’s time to redesign medical data”
![Page 45: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/45.jpg)
![Page 46: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/46.jpg)
People perform better when they’re
informed better.
![Page 47: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/47.jpg)
It’s perverse to keep people
in the dark
and call them ignorant
Corollary:
![Page 48: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/48.jpg)
“My patients aren’t like that.”
“They aren’t asking for this.”
Objection:
![Page 49: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/49.jpg)
![Page 50: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/50.jpg)
Urgency: The Demographic
Crunch
![Page 51: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/51.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 52: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/52.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
52
![Page 53: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/53.jpg)
My classmate Jay
![Page 54: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/54.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 55: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/55.jpg)
Let Hippies Help
![Page 56: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/56.jpg)
Institute of Medicine – Sept 2012 Major New Report: “Best Care at Lower Cost”
![Page 57: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/57.jpg)
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.
![Page 58: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/58.jpg)
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
![Page 59: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/59.jpg)
Wil l iam Gibson
“The future is here – it’s just not evenly distributed yet”
![Page 60: Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)](https://reader033.vdocuments.site/reader033/viewer/2022051817/547d1f98b379596f2b8b5169/html5/thumbnails/60.jpg)
“e-Patient Dave” deBronkart Twitter: @ePatientDave
Let Patients Help Decide What
Matters
facebook.com/ePatientDave LinkedIn.com/in/ePatientDave