ncqa-riqi pt centered medical home event 7-23-14 (with font problem)
DESCRIPTION
Keynote at NCQA's Medical Home Summit, July 2014. - I'll try to fix the font & layout problem - Microsoft doesn't allow "embed custom fonts" in Mac Powerpoint - sometimes it works, sometimes it doesn't! Grr...TRANSCRIPT
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“e-Patient Dave” deBronkartTwitter: @ePatientDavefacebook.com/ePatientDaveLinkedIn.com/in/[email protected]
Engaging Patients in Their Health and Their Care
1
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Disclosures
• Advisory consulting on Patient Perspective: TrialReach, TRON
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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
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“It can be argued
that the largest yet most neglected health care resource, worldwide, is the patient…”
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e-Patients.net founderTom Ferguson MD 1944-2006
Equipped
Engaged
Empowered
Enabled
e-Patients are
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Pt of future
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Me? An indicator of the future??
• Who’s getting online:– 1989: Me (CompuServe
sysop)– 2009: 76% of US adults
(Pew)
• Who’s romancing online:– 1999: I met my wife
(Match.com)– 2009: One in eight weddings
in the U.S. met online– 2011: One in five couples
met online
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The Engaged Patient12 items in my pre-appointment
“agenda” email
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The Incidental FindingRoutine shoulder x-ray, Jan. 2, 2007
“Your shoulder will be fine … but there's something in your lung”
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Multiple tumors in both lungs Where’s This
From??
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Primary Tumor: Kidney
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E-Patient Activity 1:Researching my
condition
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Classic Stage IV, Grade 4
Renal Cell Carcinoma
Illustration on the drug company's
web site
Median Survival:24 weeks
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Facing the Reaper
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My mother
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My daughter
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After the shockyou’re left with the
question:What are my options?What can I do?
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Get engaged.
Get it in gear.
Do everything you can.
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E-Patient Activity 2:“My doctor prescribed
ACOR”(Community of my patient peers)
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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
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E-Patient Activity 3:Reading (and sharing) my hospital data online
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Surgery & Interleukin worked.
Target Lesion 1 – Left Upper Lobe
Baseline: 39x43 mm 50 weeks: 20x12 mm
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Question:
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How can it bethat the most useful
and relevant andup-to-the-minute
information can exist outside of traditional channels?
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Because of the Web, Patients Can Connect to
Information and Each Other (and other
Providers)
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“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
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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.
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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)
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“It may be more dangerous
not to google your condition.”
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“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.
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Web 2.0: “When the web began to harness the intelligence of its users.” – Tim O’Reilly
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“My patients aren’t asking
for this.”
Objection:
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“My patients aren’t at all engaged.”
Problem:
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Are you??
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Peter Elias, MD (Maine)
“When my wife wants me to help pick carpet for remodeling the grown son’s bedroom and hall, I truly do not WANT to do anything and do not WANT to be involved, so I am always in the market for new and more convincing ways to say ‘Yes, dear.’”
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Peter Elias, MD (Maine)
“I love what my auto mechanic does. ‘Hey doc. Your snow tires aren’t looking so good. Do you have a preference for brand or price, or do you want me to just give you a couple good options and my recommendation?’”
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Peter Elias, MD (Maine)
“I have no problem with patients who want to come in and have me explain just enough so they can credibly tell their spouse what the doctor said. My job is to
help them reach their health goals,
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Peter Elias, MD (Maine)
“I have no problem with patients who want to come in and have me explain just enough so they can credibly tell their spouse what the doctor said. My job is to
help them reach their health goals, and the ability to be minimally involved can be one of their health goals.
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Prochaska’sTranstheoretical Model
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Hibbard’s PAM(Patient Activation
Measure)
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Models of Engagement,Activation and Change
• TTM (Prochaska)
• Patient Activation Measure (Hibbard)
• Motivational Interviewing (Miller & Rollnick)
• CDSMP (Lorig)
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How engaged are YOU?
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Patients have the most at stake
with the accuracy, completeness and
availabilityof the medical record
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Wall Street Journal, June 10
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It’s perverse to keep people in the
dark
then call them ignorant.
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“How can patients participate if they can’t see what I see?” – Dr.
Danny Sands
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OpenNotes
What happens when patients
see their doctors’ notes?
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• 99% of patients wanted to continue
• 17-26% of docs preferred not to…–But when given the chance to stop,
none did
• 85-89% of patients said availability of open notes would influence their choice of providers and health plans
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Dr. Eric Topol
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AliveCor: iPhone EKG
12/3/12: “FDA clears iPhone heart monitor, doctors can pre-order”
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Urgency:The
Demographic Crunch
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Problem(?) Chronic Disease Epidemic
CDC (2004) Ten Great Public Health Achievements in the 20th Century & Leading Causes of DeathJones (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 DeathJones (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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My classmate Jay
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Half of everyone who’s ever been 65 is alive
todayPopulation today: ~7.0 billionEnd of World War II: ~2.3 billion
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At last:recognition
from the establishment
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Institute of Medicine – Sept 2012Major New Report: “Best Care at Lower Cost”
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Yes, the IOM itselfsays 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.
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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
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Will iam Gibson
“The future is here – it’s just not evenly distributed yet”
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October 2007
2.8 e-Patient Years in Pictures…
December 2006
May 2009
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This month – first
birthday
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“e-Patient Dave” deBronkartTwitter: @ePatientDavefacebook.com/ePatientDaveLinkedIn.com/in/[email protected]
Engaging Patients in Their Health and Their Care
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